Real-Life Worries About My Future With Chronic Illness That Are Too Scary to Say Out Loud

Two years ago I was diagnosed with ankylosing spondylitis. The moment I was told this by a doctor I just remember thinking, “No, they must have it wrong, I’m only 22. I can’t have a spine condition, I’m not old enough.” All the rest of the conversation was a blurry haze of snot and tears and me mainly wanting to leave the appointment. I had dealt with psoriasis for years. From ages of 9 to 20 I felt like my life had been robbed by psoriasis. No 11-year-old girl wants to do a solo gymnastic performance because no one wants touch her. I used to pray even though I’m in no way religious that one day I would be able to wear a backless dress and tie my hair up in front of people. But even with psoriasis growing up I was brave and went dancing and did competitions in London and loads of other fun places, and just had long sleeves and legs and never tied my hair up in class.

I thought as I got older body confidence would come with this newfound wisdom in age, but actually this doctor was now telling me that with age is a ticking time bomb! My own spine is slowly fusing itself together and I have literally zero control over it. As well as zero control, it would hurt randomly and mainly constantly. Now chronic pain is absolutely no picnic, but that’s another story.

It’s been just over two years since I got this diagnosis and I am slowly getting used to the idea that this is actually happening to me and this is my life. When I was younger I used to imagine what it would be like to be an adult. To get married, kiss someone (done that plenty of times now — child me, it is not what the films make you think!) and have a baby. First, I definitely thought I was going to be a bit taller, but that fantasy was squashed many years ago! And now there are many perks to being a short girl, mainly always being able to date taller guys!

But with the recent serious flare-up of my back, my life is changing from what I imagined at such a shocking rate, and it’s bringing up some unexpected life fears I had never contemplated.

So guys, here goes…

The list of fears that almost seem too scary to say out loud to my friends and family. The fear of sharing the deep sh*t that I’m going to write about that can scare people, and if they don’t know what to say it can become awkward, or worse they might say something that makes you feel unheard, ignored or that you’re being silly. I know no one would ever mean to do that, but when you are telling someone you literally have pain every single day, it can get intense or just plain awkward. I can’t see a “light” at the end of that tunnel which is my conditions because they aren’t treatable, and I have accepted that there might not be light, but that doesn’t mean I’m going to give up on life. It’s just that my life is going to be different. But it does make it a scary lonely place, when you can never say what really scares you about your life.

So…

Number one: What if one day I can’t wipe my own bum or go to the toilet without help? The big old toilet dilemma. Some days I struggle taking my shoes off and feel embarrassed and like a burden asking someone to help me. I don’t know how I would feel if I needed help wiping my bum, washing my hair, etc. Everyone says don’t worry about things until they happen, but the problem is no one can tell me if it will happen or not.

It’s not the actual bum wiping or being naked part that I’m worried about. It’s how I will feel not being able to do it. I find it hard now asking for people to carry things around for me and it’s not fun. What’s strange is I don’t think I’ve ever wanted to be able to do my own washing so much. It’s not just washing, it’s carrying things, pushing a trolley, lifting boxes, going shopping! I’m 25 and going shopping is an actual nightmare. I can’t carry things, push the trolley, or try on jeans after jeans. So if one day I need help to wipe my bum, I’m scared of how that will make me feel inside and not because I will be embarrassed or cross or scared to ask, but because of the fact that I have to ask someone to do this task that at some point in my life I could do.

Big fear number two: Could someone love me? Now, I’m a catch, I’m brave enough to write this to start with! I am so loyal and will give all my love to people and I am excited about life and the people in it. But at some point in the future I’m afraid people will get fed up of helping me and I will become a burden. If this is only going to get worse, then I’m only going to need more help, not only physically but emotionally.

I seem to be one of those people who is an emotional sponge for everyone else, and then I never fully offload onto others. Not because they don’t offer, but sometimes only you can deal with the stuff going on for you. But sometimes I need to offload. I try so hard to be happy all the time and I find it hard to let myself not be, but in reality some days I am so so sad and I need to talk about that and every little grief I feel when something I could once do is snatched away with no warning of time left doing it.

Fear number three and probably for me the biggest: Will I be able to look after my children the way I always dreamed? The only thing I have know since being a child was the only thing I ever wanted to do in my life is become a mum. I am at that age where I have realized my ovaries are dying! I know I’m only 25 but I am quite dramatic! But still, in five years’ time I would hope I’ve had at least one baby. The logistics of this for someone with a condition like mine is very different than any fit, healthy, young girl who decides to have a baby.

So first I have to actually decide! Many people don’t have that pressure, it just happens either by mistake or surprise, but for me this is sadly not an option. The planning I’m going to have to undertake is immense. To give an idea of how much of this I have internally analyzed, I’ll just give you a taste of some problems I’m going to have to overcome.

• Do I need to stop all my medicine and for how long before I then start trying to have a baby?
• How will I manage nine months with no painkillers for my back?
• How will I manage without my immunosuppressants that currently pretty much keep my skin on? Big fear: falling-off skin for nine months is not an enjoyable experience.
• How will I carry a pregnant belly with my back?
• How will I carry a baby with my back?
• How will I carry a toddler with my back?
• Can I breast feed on my immunosuppressants?
• How will play with my baby if I can’t bend to the floor?
• How will at all have the energy to ensure I’m happy all the time and push through my constant pain for my baby?
• What if my baby has any of these illnesses?

…and the list continues. I have dreamt of having a family all my life and my biggest fear is that my spine condition will prevent this happening.

Despite these fears, there are many things I have learned about myself through my condition. I am braver than I ever give myself credit for. Yes, I’m scared of ghosts and very much dislike spiders, but for the brave, real-life complications that have been thrown at me, I have no choice but to face them. I can’t ignore those fears written above — I have to face them head-on because my life isn’t going to stop because of this condition. But it would help if I felt a bit less scared of these things.

Reading other people’s blogs has helped me not feel so alone in my fears, and maybe someone without the condition will read this and hopefully get some insight into someone’s fears when their life is very different than a healthy person’s life. I did not choose to have my conditions and I also have no control over how fast they will progress or the severity they will reach, but I have control over my life because I have resilience and hope. Another thing my condition has taught me is that life is precious. If you can dance then dance, rolly polly, touch the floor, pick up your children and play fight with your partner because at some point, for some reason you may not be able to do that again, so enjoy everything. Nobody is promised tomorrow.

Getty photo by piyapong sayduang