It can’t be easy can it?

Well I wanted to know what it’s really like for them, so I asked my rock, my light, my love, my partner Mark. And this is what he said…

Jas: What were your first thoughts when I was diagnosed with ankylosing spondylitis?

Mark: Oh I don’t know darling, it was a long time ago.

(At this stage, I should point out that Mark is clearly not in the mood for this “interview.”)

M: I guess I was upset for you. I was angry that no one had worked it out before then, that it took so long.

(He’s referring to my nightmare year of diagnosis. You can read more about that here.)

M: And I guess a bit pitying for you.

(He notices my rather shocked, unimpressed expression before realising his mistake.)

M: Is that bad?

J: Yes Mark, that’s bad…I don’t wanna be pitied.

M: Okay sympathetic then, is that better?

J: Marginally. Does my illness impact our relationship in any way?

M: I mean, I have to hear you moaning about it. (He’s not wrong there, I do moan a lot when I’m flaring!) But no, I don’t think it really affects us as a couple, apart from when it puts you in grumpy moods, which is completely understandable. I don’t think we’ve ever let get in the way of our relationship. It doesn’t define you, so it shouldn’t define us.

J: Does my ankylosing spondylitis impact your daily life at all?

M: No, not really. Apart from having to find hiding places for the codiene that is!

(I should clarify here – I’ve had issues with codiene dependence in the past. I’m doing really well with it at the moment, but I still have the odd moment. So Mark becomes the guardian of the meds until I really need them.)

M: Other than that and rubbing deep heat into your back at various times of day, and making up hot water bottles every now and then, my day-to-day is the same as it’s always been. We’re quite lucky I suppose that your AS is under control at the moment, so we don’t need to go to the doctor’s every day, or go to hospital appointments every week. It could be a lot worse couldn’t it?

J: Do you ever get annoyed with me, because of the AS?

M: No of course not, that would really make me an ******** wouldn’t it! No, I mean I get a bit annoyed when you do things you shouldn’t do, like when you’re having a flare up and you still go to the gym and push yourself. Or if you lift something too heavy. But it’s up to you isn’t it? It’s your body and it’s your life, I can’t tell you not to do things, I can only say “I don’t think that’s a good idea, ’cause you’ll be hurting later”, and let you decide for yourself.

J: What’s the worst part about my ankylosing spondylitis?

M: When I can see you’re in pain, but I can’t do anything about it, I can’t make you better. That’s pretty hard to see.

J: How do you think my AS has changed me?

M: Um…I don’t know. It’s made you grumpier at times.

(Okay, so he keeps saying I’m grumpy, but I’ve got good reason for that sometimes you know? Especially when I’m having a really bad day with the AS like this.)

M: It’s made you a bit skeptical of the medical profession, but that’s okay, I can see why. But I’d say it mostly makes you wanna go out and do loads of stuff.

J: Do you think it’s changed you at all? Like your outlook or anything?

M: No, not really, I try not to think about it to be honest. We’ve just gotta get things done quicker than if we were younger and healthier I suppose. We’ve gotta see the world before I die and you end up in a wheelchair, don’t we?

J: Wow.

M: You wanted me to be honest!

J: Yeah, but ***** ‘ell mate! Okay, do you think you do too much around the house? Do you ever think I don’t do enough?

M: No I honestly don’t at all. I think we both share out the housework well, neither of us does more than the other. Like when you’re having a flare up, I’ll take on more ’cause physically it’s a struggle for you to do certain things. But then the week after, when you’re feeling better, you’ll do more. So it all balances out really. But I won’t lie, I’d always want you to do more, ’cause I don’t wanna do it! But I’m lazy ain’t I?

J: Yeah you are – joking! So mate, have you ever thought “**** this mate! I didn’t sign up for this!”?

M: No darling, I’ve never thought that. I’m not saying it’s easy at times by any means, like you’re a nightmare as it is without your AS added to the mix!

J: Rude.

M: Let me finish. But with all that, I’m so proud of you and the way you tackle whatever’s thrown at you. You don’t let the AS stop you from doing anything, so I never feel like I’m missing out on stuff. If anything, the AS makes you more determined to do things that prove you can do everything you want to. So no, I’ve never thought “**** this” and I can’t imagine I ever will. There’s more chance of you thinking it about me!

J: True dat! What would you say to someone who’s partner, long-term or short-term, has recently been diagnosed with AS?

M: Oh God. Well obviously it depends on how bad their condition is. You manage yours well, but that doesn’t mean others do, so they could be in a completely different situation to us. If their AS was the same level as yours, I’d say “No problem mate, you just gotta put up with some grumpiness and rub deep heat into her back at times!”

J: So you wouldn’t tell him to run a mile?

M: No, not at all. If you really want something to work, it’ll work.

J: Are you worried about what might happen in the future?

M: Nahhhh, I’ll probably be dead by the time your AS gets worse, IF it gets worse…Or at the very least, I’ll be too old to push your wheelchair, so you better get a battery powered one!

J: Nice!

M: Well you know me. I try not to worry about anything. What happens, happens. There’s no point in worrying about what hasn’t happened yet.

The wise words of Mr Mark there folks. Have I mentioned today what a good egg he is? I feel bad for him sometimes, of course I do, but in truth we’ve got it easier than most. My ankylosing spondylitis is thankfully very manageable at the moment, so there’s not a lot I can’t or won’t do. I might not be the same girl he met nearly 10 years ago, but we can blame that on life and time, not just the AS. Will my disease become a burden to both of us in years to come? Who knows, only time will tell. But right now, we’re just enjoying our life and time together as much as we can, doing all the things we want to do together! It’s often easy to forget the partner behind the patient, so let’s not! Love them and tell them that just by them being there makes everything that little bit more bearable. Laters Taters x

Laters Taters is a blog written by Jas and Mark to share their adventures and their journey with axial SpA (AS), check them out here! 

The post What it’s like to love someone with ankylosing spondylitis appeared first on ASone.

When you slip under the sheets to have sex for the first time with a new partner, it’s normal to have a thousand questions rush through your head. Questions about what they might like, what you like, and the inevitable intrusive thought about this week’s grocery shop.

Voicing these thoughts and communicating how your feeling is a key part of a healthy sexual experience. (Though, that grocery list doesn’t make for the most tantalising pillow talk: maybe keep that one to yourself.)

One conversation that is rarely planned-for, however, is the one where you reveal details of your chronic pain, illness, or disability to your partner. Dating is hard enough, now you have to think about how to tell a potential partner about your health?

You’ll probably wonder when the best time to have this discussion might be; do you broach it during foreplay? Before you reach the bedroom? Or maybe wait until they suggest a slightly over-zealous position and you have to explain that, unfortunately, your hips just don’t bend that way.

I was diagnosed with inflammatory arthritis, specifically Ankylosing Spondylitis, at eighteen years old, and developed it when I was thirteen.

The National Axial Spondyloarthritis Society (NASS) states the typical symptoms of axial spondyloarthritis (which includes ankylosing spondylitis) are; early morning stiffness and pain, chronic back pain and chronic fatigue. The organization also details that the condition can affect things like bone density, gastro health, and can cause pain in a wide range of joints. I’m very familiar with all these symptoms, and a common response people give when I divulge my diagnosis to anyone, regardless of context, is that I’m far too young to have such a disease.

It’s possible that I exude a “hips don’t lie” aura, or maybe — and this is more likely — the dating scene has not yet adjusted to the notion that young people can, and do, have arthritis.

Contrary to popular belief, the majority of people with axial spondyloarthritis including ankylosing spondylitis develop it in their teens or twenties. It most commonly causes severe pain in your lower back and hips, as well as widespread stiffness and chronic fatigue.

It is unreliable, which means I can switch between being a (somewhat) nimble, active date who is the perfect companion for an adventure, and the perfect candidate for someone who is really, really good at staying still and watching a significant amount of Netflix.

This occasionally means that, if I’m in a good period of health, my condition may not come into conversation, as I don’t present as significantly ill. If I am going through a more troublesome time with my pain, it may be one of the first things I feel as though I need to get out in the open.

Sex with arthritis can be daunting. With an unreliable and unstable condition, there’s no telling how you’re going to fare from night-to-night.

Having a significant flare-up of your condition can mean sex is virtually impossible, yet if your condition is unpredictable and unstable, you can be raring to go just a few hours after a flare-up. Having to explain this, and all the other intricacies of arthritis, to a new partner is a less-than-calming experience — but it’s worth it.

As an outspoken, sex-positive, outgoing disabled person, I would love to say that I don’t find it difficult to talk about my arthritis in relation to dating or sex … but that’s not the case. It can be tough, even for me.

Growing up in a world where you’re taught that disabled is equal to unattractive, undesirable, or burdensome leads to an internalized ableism that leads to many a hurdle in regards to loving yourself and ensuring self-confidence all around, and especially in your love life.

It’s understandable to not always feel sexy with a diagnosis of arthritis or any other chronic pain condition, as it is not befitting of what you’re taught to believe is sexy. With arthritis, or at least in my experience with arthritis, you’re stiff, you’re in pain, your mobility is infringed upon.

These are all things that you’re implicitly taught are unsexy. In fact, everything we’re socialised into believing as stereotypically ‘sexy’ does not factor in any notion of disability.

Therefore, it is unsurprising to not feel as though you belong in the Playboy mansion with joints as stiff as a board. But contrary to the abundance of ableist messaging we’re subject to, sexy and disabled aren’t mutually exclusive traits. That, however, is sometimes a little hard to remember whilst trying to navigate through the world of dating with arthritis.

This is where, in this case, if you’re the person living with arthritis, the concept of self-love comes in. Not the pop-culture style of self-love which demands you allow face masks and RomComs to make a significant dent in your bank account in the name of an ego-boost — but tricky, perception-altering self-love that sets you on the road to accepting yourself as both arthritic and sexy: sexy with a walking stick, sexy with a limp, and sexy when bending in any way but to grab some painkillers is a no-go.

If your partner has arthritis, it’s understandable if you don’t know all the facts, figures, and intricacies of what it means to live with arthritis: you don’t need to in order to be supportive. What you should do is be patient. Understand that all bodies are complicated and take a while to understand, and that is doubly true when being with someone with arthritis, or any disability.

There is an abundance of resources available that give details of the intricacies of sex and arthritis, from what positions are most advisable, to the medical impact of sex on arthritis.

However, the best way to support your partner with arthritis is to talk to them.

No leaflet, YouTube video, or blog post can tell you exactly how to support your partner’s specific needs. Everyone’s experience of arthritis, and with any disability, is different. No two people will have the same comments to make about what it is like to date or to have sex with arthritis, even if it is the same type. So open communication is key.

Sexiness and arthritis, have been regarded as mutually exclusive for a long time. This is partly because arthritis is typically associated with the elderly. But that’s just factually incorrect.

It’s also due to the fact that many chronic health conditions, many disabilities, are regarded as numerous things — sexy typically not being one of them. Even for us, as those living with disabilities.

Loving your arthritic body (or your partner’s arthritic body) into a state where sex is comfortable, fun, and supportive, can be done.

But it starts with mixing up a cocktail of open communication, respect, and the rejection of ableist views that see arthritic and sexy as antithetical. Not just for us, but for the people who desire us.

Bethany Dawson is a freelance journalist and blogger focusing on feminism, disability rights, and British politics. She’s currently working for a bachelor’s degree in Politics and Sociology and navigating the complexities of Westminster. Follow her on Twitter @bethanymrd for more, and check out BVisible for her work on invisible illnesses.

The post How to talk about your axial SpA (AS) before having sex with someone new appeared first on ASone.

I always think to myself that I can’t picture a person that has a chronic illness and doesn’t experience depression. It’s just so hand-in-hand to me at this point that I don’t know how you wouldn’t have both. Having a chronic illness is by far the hardest thing I’ve ever gone through. It affects you socially, physically, mentally, financially, basically any way you can think of. It changes your entire life. You have to adjust life as you knew it and do everything differently. No wonder one-third of us are depressed, too.

Chronic illnesses aren’t talked about very openly. Before I got one, I had no idea what they were. Being in pain forever? How can that be possible? Little did I know.

When I first started being in pain, I isolated myself from everyone for months. Partly because I couldn’t even walk on my own, let alone go out and be social, but also because I got so tired of being asked what was wrong with me. I didn’t know, doctors didn’t know, so how could I explain that to someone who wasn’t going through what I was going through? It was a dark time in my life, to say the least.

I know that a lot of people go through isolation while dealing with chronic illness. Isolation directly leads to depression. There’s no way it couldn’t. Humans aren’t meant to be alone. Not being able to do what I used to do with my friends was and still is very depressing to me, especially as a young person with a chronic illness. All I want to do is go out and do stupid twenty-something-year-old things with my friends, but those days are behind me and have been for a while. That doesn’t mean that it gets any easier. Or at least it hasn’t yet.

And then of course there are the days where the pain is especially bad. Those days where you kind of forgot that you were in pain for a while, and then it appears just to remind you that it’s there, and it’s not going anywhere. This is called a flare-up. These days are terrible because they’re just a constant reminder that you’re going to be in pain forever. At least that’s what they’re like for me.

On a normal day, I tend to forget that this is my life because I’ve become so accustomed to it, but the days where I’m limping, or can’t move from the bed or the couch tend to be really depressing. You kind of just get used to the hot packs and Netflix, and wait for the flare to be over.

I’m not the person to tell you there’s some magic cure to handling both a chronic illness and a mental illness (or more than one). But, I can say that finding someone, whether that be a family member, a close friend, or a therapist to confide in and talk through what you’re going through can be incredibly healing. I’m also not going to tell you that having someone to talk to makes it all better, but it can help even a little bit when things are particularly bad in your head. Taking that step to talk to a professional has been what’s kept me (for the most part) grounded since being diagnosed with AS one year ago.

Please don’t ever hesitate to contact me either through the comments here or on my Instagram account if you need an ear to listen. I’m more than happy to help anyone who needs it! As for dealing with chronic and mental illness, that’s an obstacle that I, and many others are still dealing with on a very regular basis.

Steff lives with AS and has a blog dedicated to helping others with this condition feel more comfortable and not alone. She writes about the struggles we go through on a daily basis from energy and fatigue to juggling AS with friendships. You can follow her on instagram and read more of her blogs here.

The post What it’s like to live with ankylosing spondylitis and depression appeared first on ASone.

Steff lives with AS and has a blog dedicated to helping others with this condition feel more comfortable and not alone. She writes about the struggles we go through on a daily basis from energy and fatigue to juggling AS with friendships. You can follow her on instagram and read more of her blogs here.

The post Dating and ankylosing spondylitis appeared first on ASone.

These are 10 of the things I want to tell people everyday about my life with ankylosing spondylitis:

1. I want to talk about how even when I look fine, I might be in pain. And even when I’m not in pain, there is a good chance I’m mentally struggling to cope with all of the different things happening in my life.

2. I want to talk about how afraid I am of getting sick because my immune system is compromised from the scary medication that I’ve been put on to manage my disease.

3. I want to encourage medical professionals to explore the field of rheumatology, so that when I need to go to the doctor I don’t have to wait 6 months for the next available appointment.

4. I want to explain that arthritis isn’t just when old people’s joints start to hurt – arthritis is a condition that is so much more than that, and can affect people at any age.

5. I want to SCREAM AT THE TOP OF MY LUNGS about the importance of affordable healthcare for all, and adequate coverage for people with pre-existing conditions.

6. I want to tell people to love, care for, and appreciate their healthy bodies, because I would give anything to have one.

7. I want people to understand that sometimes I need to do what is best for myself, my health, and my body, and I’m always worried about hurting someone else’s feelings or disappointing them by having to say no or change plans.

8. I want to tell people that there is no guaranteed treatment or cure for my disease, and that what works for one person may not work for someone else.

9. I want to tell people that their compassion and understanding is more useful to me than their treatment recommendations. I would rather have you ask questions and learn about my disease than tell me to try drinking more herbal tea or do more yoga.

10. I want everyone to know that I am so thankful that medication is working for me, but it doesn’t mean that the impact of my disease on my life is gone. I always wonder how long the medications will work for me, whether or not someday I’ll have a severe reaction to them, and what my future will look like. I try to live in the now, but the fear of what the future holds always exists.

Erin was diagnosed with ankylosing spondylitis when she was 25 years old, and found community and support through social media. She started blogging as a creative outlet, and hopes that by sharing her story she can help others facing chronic illness feel less alone in their journey. She enjoys spending time with her husband and two rescue dogs, and works every day to live life to the fullest in spite of her AS. You can read her blog here or follow her on Instagram.

The post 10 Things I want to tell people about my life with ankylosing spondylitis appeared first on ASone.

Now, something that’s pretty typical to ask when getting to know someone is “Well, what do you do? Do you go to school? Do you work?”, and for me, that’s the most dreadful question to have to answer. And it’s always the first one asked, too. Not everyone understands you when you say “Oh, I actually don’t do either, I can’t work right now due to health issues”, surprisingly. And then, for what feels like the millionth time, you explain that you have AS, and your body is in constant pain, and right now you’re just trying to learn how to deal with everyday life while balancing having an autoimmune disease. After saying all of this, you either get someone who understands and asks no more questions or someone who’s wondering “what’s so hard about having a chronic illness?”. And this is where meeting new friends, and trying to tell your pre-existing friends, all come together.

When I first got sick, I kind of cut myself off from all of my friends. I was in a constant state of excruciating pain, and that alone made me not what to explain myself to anyone. I had no idea of what was going on with my body. All of my time was spent either sleeping, at doctor’s appointments, or watching YouTube.

I spent my time like this for months, until my physiotherapy started helping me feel better. When the weather got warmer, I started reaching out to my friends again. At this point, I knew I had chronic pain, but for unknown reasons. This made it harder to explain myself than it is to do so now. I would just tell my friends that it hurts to walk and that doctors can’t figure out why, and most of them were empathetic and understanding.

Let me tell you, having a chronic illness is a GIANT part of my life. So I talk about it quite often. I like to talk about it. Some people don’t like that, so I lost a few friends right off the bat just from explaining myself when asked: “what’s up?”. After a few explanations of what was going on, they no longer asked what was up, and slowly faded out of my life. Or, if I was upset that no one could figure out was going on inside of my body, I would be told “Don’t overreact so much. They’re doctors, they know what they’re doing”, and would try to dismiss everything I said as me just being dramatic. A big part of having a chronic illness is the support system you have around yourself. Your friends, your family, your doctors, therapists, etc, and I learned pretty early on that if someone doesn’t show you support, you don’t need them. Having AS is stressful enough on its own, I don’t need people around me that think I’m either faking or overreacting to something that’s a serious issue, and neither does anyone else.

Now, don’t even get me started on the fatigue. This is probably one of the biggest issues I have with being sick. I’ll get exhausted from doing something like going to the mall for an hour, or even going to visit family for half a day. I’ll spend the next day in bed sleeping all day, with no energy when I finally do wake up. Fatigue is the most frustrating symptom to deal with, because it’s seen as lazy, and no one really understands it. It just happens. This is also a common issue when planning events with friends. Sometimes I cancel things last minute because I just can’t bring my body to get out of bed, or if I do, I just don’t have the energy to travel to see friends for a few hours.

I feel extremely guilty about my fatigue, but it’s something that I can’t help, and it’s gonna be an issue for the rest of my life, but my health and well-being will always come first. We should never forget that. True friends will understand. They might be mad, as they should be, but they can see from your point of view, and realize that there’s always next time. I’m thankful that the friends that I have care about my health first, no matter how long it took to get to this point. They stuck around for the long haul.

Saying all of that though, it’s extremely important to let your friends (and family) know your limits. If you’re going through a flare, tell them. If you need help walking up the stairs, or getting up out of bed, let them know. They’ll be there to help you. If you are too tired to go see them, be straightforward about it, the more honest you are about your illness, the easier things go, I’ve found. There’s no use in hiding what is now you.

As I said earlier, having a strong support system is the most important thing for your physical and mental well-being. I’m so thankful for things like Instagram and Facebook because I can join groups and connect with people who have my illness or similar illnesses all around the world. There’s nothing that feels better than having someone to talk to who understands what you’re going through and goes through similar things that you do. It’s incredibly freeing and so helpful. I’ve found so many new friends through Instagram over the past year and I’m so grateful for all of them.

I acknowledge that friendships are hard in general, but I wanted to share with people who don’t know what adding that little spice of chronic illness can do to totally shake up that aspect of our lives.

Steff lives with AS and has a blog dedicated to helping others with this condition feel more comfortable and not alone. She writes about the struggles we go through on a daily basis from energy and fatigue to juggling AS with friendships. You can follow her on instagram and read more of her blogs here.

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At first I found the dark side of chronic illness. I found people who were very angry and pessimistic, and who only posted the pain and sadness that they faced. I was already struggling with my new diagnosis, but now I was also worried about developing heart problems, losing my job, becoming completely wheelchair bound, awful medication side effects, my loved ones leaving me, and my head exploding into a million pieces (not literally the last one- but I was pretty worked up).

Eventually, I started to find people who I could relate to. People who shared the positive and negative aspects of their journeys. People who wanted to offer advice, guidance, and support to each other. I went from constantly feeling dark and dreadful to recognizing that, while my life had changed, it wouldn’t all be bad. I would still have good times and happiness, and I had a new family to share all of it with.

I recognize that real struggles are an honest part of chronic illness, but I also feel like we need to share the positive moments too. I don’t think it helps anyone to only focus on the negatives; we all have ups and downs, sometimes more of one than the other, but sharing the complete journey is what brings us together and creates a beautiful support network of chronic illness warriors. I had found my community of people like this through social media.

I wanted to be like those who had helped me. If I could give one positive message, or help make one person’s new diagnosis a little less scary, I wanted to do it. I created an Instagram account to share my story, and words of support and encouragement. Initially I didn’t include my name or any personal details about myself. The internet was a beautiful place, but I wasn’t so naive to think that there wasn’t still negativity and judgement. At that point I was just a little too afraid to totally put myself out there.

Over time I gained confidence and acceptance in my diagnosis, and realized the importance of sharing my story. Being diagnosed with AS I felt alone and isolated because no one that I knew had any idea what I was dealing with. In reality, it isn’t a rare disease; but if every person who has it feels that same fear to share their story that I did, it will never become any more commonly known.

My story is worth sharing, and I want to be open and honest about my life, my challenges, and my triumphs while battling AS.

I introduced my real self to social media, and have continued to share my story. I am building real connections with people who are facing the same struggles as I am, and I feel incredible when someone tells me that I gave them hope, or helped them navigate their diagnosis in any way.

So, thank you to the people who have helped me navigate this disease, and who have offered support and words of encouragement.

Thank you to those of you who also share your honest stories, (the ups and the downs) so others can learn from you and relate to you.

Finally, thank you to Facebook and Instagram communities – the people who open themselves up on them, for being MY community and comfort in one of my greatest times of need.

Erin was diagnosed with ankylosing spondylitis when she was 25 years old, and found community and support through social media. She started blogging as a creative outlet, and hopes that by sharing her story she can help others facing chronic illness feel less alone in their journey. She enjoys spending time with her husband and two rescue dogs, and works every day to live life to the fullest in spite of her AS. You can read her blog here or follow her on Instagram.

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I pondered about how the pain, medications, anxiety, and even sometimes depression would affect my relationship, but no one could tell me how these factors would impact my libido, my ability to be intimate, or my self-esteem. There are so many intersectionality pieces between AS and a person’s overall well-being, but doctors, and sometimes partners forget that sexuality and intimacy is just as important as managing AS symptoms.

There are 3 main puzzle pieces that have helped me regain my sexuality not only with my significant other but with myself.

Communication

This seems like a simple and intuitive step in an intimate relationship, but it can become difficult as AS or other aspects of disability become overwhelming. Disability becomes the focus, and the conversation usually shifts to the appointments, medication, and other immediate stressors. Intimacy, pleasure, and sex gets put on the backburner while everything else gets sorted out. It never feels like there is a good time to bring up the conversation, and usually quelling pain associated with AS takes priority, especially when newly diagnosed.

So, if there is never a good time to address intimacy needs then there is only one way to bring it up; and that’s to deliberately make time for both you and your significant other. This conversation requires both of you to be mindful and actively listen, which means no other distractions such as your phone. Also, it is important to have this conversation sooner rather than later as it can ease the anxiety and at times guilt that accompanies the lack of intimacy due to psychological or physical barriers.

Couples should talk about everything right down to the fears, the pain, and then build up to the kind of intimacy you both want from each other.  It is so crucial to discuss each other’s comfort levels and what intimacy and sex will look like for the both of you especially in flare-ups. Addressing this puzzle piece openly provides opportunities for connectedness, empathy, and support to further build on the emotional intimate relationship. Communication is certainly the key when it comes to each other’s expectations, emotions, and comfort.

Comfort

Intimacy and sex can become very uncomfortable especially when AS is flaring creating physical barriers. It’s hard to even want to do anything when pain is the primary focus.  This is where the first part of the puzzle comes in and that’s to communicate this to your partner. When I was newly diagnosed and in severe pain it was difficult to even know what I needed or wanted sexually. It was the last thing on my mind, but without discussing this with my partner he didn’t know how to even approach me. All he knew was that I was always turning him away which created conflict.

I learned in my journey that discussing what I’m comfortable with during my flare-ups allowed us to continue to keep our spark, but this also gave him options to still be close to me. Finding what makes you most comfortable during sex requires trial and error, and it does not need to be figured out in one night. Living with AS can mean that needs change and that is quite alright. It can mean finding different positions, experimenting with adult toys, different lubricants, and what feels good in the moment.

Physical and energy levels can change so it’s important to be empathetic, patient, and recognize that it is no one’s fault when sexual intimacy does not go as planned. There have been many times for me when cramping and spasms in my lower back prevented me from continuing. I would get so frustrated and upset, blaming myself, but I had to realize that this is my new normal and it’s ok. I had to have this conversation with my partner and learned that intimacy was more than just intercourse.

Intimacy

This brings us to our third puzzle piece, sex is only a part of intimacy. For the longest time I struggled with my self-esteem as the symptoms of AS took over. I felt restricted and at times a failure in sexual intimacy when I didn’t have the energy or physical capacity. I believed for the longest time that sex was intimacy, and it wasn’t until later along my journey that I realized that this was not true.

Intimacy is closeness, support, warmth, and memories being built between you and your partner, yes intercourse is important, but it is only a part of an intimate relationship. I learned that being intimate could mean taking a shower or bath together, or watching a movie while cuddling, sending texts to one another, or sometimes something as simple as a kiss on the forehead. What I’m describing is known as emotional intimacy and it is the glue that holds relationships together.

Sometimes we cannot change the way our body is feeling or working, but we can create intimate memories, and build our connectedness to our partner despite physical barriers. Intimacy requires communication and active listening between you and your partner. There are no shortcuts to this and requires emotional labour from both sides.

Interconnected

These three puzzle pieces are interconnected, and one cannot fit without the other. These three parts create a picture that provides opportunity for you and your partner to build intimacy by being mindful, empathetic, and communicative about each other’s needs. I became more confident and regained my sexuality through being patient, forgiving myself, and finding what makes me most comfortable. Once all the puzzle pieces were in place I was finally able to reconnect with my partner both emotionally and physically. This conversation can be tough to start, but an important step towards a healthy intimate relationship.

Aerie is a married, passionate child and youth worker, psychology student, AS warrior, disability advocate and activist, blogger and caffeine enthusiast all rolled into one. She’s also started the Inclusive Community Engagement and Experience (ICEE) project, bringing training and awareness about the disability community in the university, further empowering students and fighting ableism. You can read her blog whimsyinx.wordpress.com or follow her Instagram @aeriekm17

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I started to feel AS symptoms when I was only 15 years old. It gradually made my daily life more and more difficult. Of course, I went to the doctor and he told me it was ‘growing pains’ and that I should do more exercise. This didn’t add up and made me really upset since I considered myself a very ‘sporty’ girl. After that I even started to blame myself for not being active enough.

By the end of that year, our family welcomed a new member: the African grey parrot, Jordi. He was only four months old at that time. I took care of him and Jordie grew into a beautiful and clever adult parrot.

Being responsible for such a little, delicate being made me forget about how helpless the pain was making me feel. When I was with him nothing else mattered and knowing that I’m the most important person in someone’s life made me feel better with myself. When I was in so much pain that I couldn’t even stand, he was there for me. Sometimes he repeated the words I taught him or did silly things that made me laugh. The life was better with my little companion.

Around that time I started dating my boyfriend. He was a proud owner of two dogs: Taca and Mixa. Both were quite old but it didn’t change the fact that spending time with them was magical. Over time they accepted and fell in love with me. We used to go hiking, take long walks and go to the beach.

They encouraged me to go for walks, even on the painful days they were good excuse to stay active. On the days when pain was unbearable they always stayed by my side. As they grew old, they had pain problems too; I felt that I could identify with them, we understood and took care of each other. In 2014 Mixa sadly passed away, it clearly made Taca upset as she seemed to grow older with every single day. That changed when we rescued a 2 months old puppy, Halloween, mix of French Bulldog and Pitbull. After that Taca came back to her old self and lived her last days like a teenage dog.

Soon after we adopted Halloweem she started to have serious health problems and almost passed away. Even during those darkest days when she was fighting for her life, Halloween always stayed by my side helping me with my pain. Now, she is such an active dog, even when we’re at home she always wants to play and when I play with her the pain disappears, I just forget about it.

Eventually, I was diagnosed with ankylosing spondylitis. I’m on biologic therapy now and finally starting to feel like a normal person.

Living with AS, you have to stay active and pets can be a great support. Also, your animals will faithfully stay by your side. Pets always listen and they never judge – something you can’t always say about humans. My animals help me to stay strong not only for myself but also for them: they need me and I need them.

People can be very unsympathetic with their ignorant comments, useless advice and lack of understanding. It can really bring you down and push into thinking that you are alone. But with your animals you’re never alone.

Having pets is the best treatment ever in my experience. But even if you can’t own an animal, don’t feel alone. You aren’t, there are a lot of people with the same condition around world that would be happy to talk, give you advice and share their story with you.

23-year-old Marga comes from Mallorca, Spain, she’s got a degree in Biology and starts her post-graduate course in Marine Ecology soon. In the future she wants to travel the world, help endangered species, deal with invasive species and rescue wild animals. She also lives with her pets: an African grey parrot Jordi and pitbull-frenchie Halloween that help her to cope with her ankylosing spondylitis.

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We’ve become stronger and closer than ever as a family, we’ve had to learn to understand and gain knowledge and strength from one another. Don’t get me wrong, AS is always there; on weddings, birthdays, family holidays, parties, it is the unwelcomed guest to all the best days, a crushing reminder that things are not 100% okay.

Sometimes all my Dad needs is someone to say, “What do you need?” He doesn’t need uninvited advice on what he should and shouldn’t be doing, like everyone has suddenly become an expert on the illness. He’s heard it all before and quite frankly becomes annoyed.

Think about a time when you felt ill or in pain, did you want a load of people talking at you 100 miles an hour? Thought not. It’s okay to leave the person to rest or with their own thoughts for a little while, to collect themselves, to deal with it in their own way.

Pain changes a person, something I never thought I would have to face with a family member, let alone my Dad. He tries so hard to not allow his pain to stop him from doing anything, but I know it kills him and it’s up to family members and loved ones to say “enough is enough”. My Dad is a fighter and has undoubtable pride in himself, something I have always looked up to him for.

He is the stability, and having that being threatened to fall and cave means we have to step up and support him, whether it’s a simple text just checking in or a hug. It’s needed and makes such a huge difference to that person’s mood.

Regardless of the pain he is in, I’ve noticed asking my Dad questions and getting into a deep conversation about anything with him (from The Walking Dead to the meaning of the universe!) it distracts him and lifts his mood, even just for a moment, and it’s worth it. These moments not only save my Dad but they save me, they save me from thinking about becoming ignorant to it all and walking away.

My Dad’s new biologic medication arrived last week, we’re still waiting for a nurse to come and show my Dad how to use them correctly but things are finally moving forward. Maybe this is the answer for him, maybe it will take another couple of trial and errors to get there, but there is treatment out there, although there may not be a cure there is still hope of at least lessening the symptoms which is a step in the right direction.

Who knows, maybe in 10 years’ time there will be a cure, there’s always hope. Every time I open our fridge and see the box of injections I’m reminded of that and it’s something to always keep in mind especially on the particularly bad days.

Sophie is a filmmaker from Manchester currently working on a film about ankylosing spondylitis, you can get involved and follow the progress of this project here, as well as follow Sophie’s blog here.

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