Coping with an invisible undiagnosed disease

Stress does funny things to people. I don’t feel like myself anymore. I feel like I can’t look at the world in the same way. Hearing people talk about going to the gym, keeping fit, going for a run, going for a surf, even going for a long walk, makes me want to sob.

I’m scared for my future and don’t understand what’s happening to my body. It’s even more frustrating that I don’t feel like anyone else understands either. I’m lonely and frightened and feel like I’ve lost control. I’ve tried getting medical help but doctors don’t seem to be able to register, let alone diagnose, that there’s anything wrong with me.

It’s hard to keep pushing for answers. It’s taken me 2 years to convince even my own mother that I haven’t googled myself sick. Yet my knees and muscles in my legs now feel constantly unsteady. The knuckles in my right thumb & little finger have enlarged — the only thing visible about my illness. I get flares of disease activity where I feel exhausted with pain that travels around my joints making them crack and click. Other times it vanishes and I’m grateful for being able to run up the stairs.

The short-comings of medical professionals is crushing. I’ve been to the doctor so many times and they keep coming back telling me my tests are normal & ignoring my symptoms. Most doctors (even rheumatologists who are supposedly specialists in autoimmune diseases) aren’t aware of the spectrum of autoimmune diseases — you have well-known ones like rheumatoid arthritis, diabetes, lupus, and then hundreds of lesser-known ones. I think I’ve got something called a seronegative spondyloarthropathy — hardly rolls of the tongue! “Spondyloarthropathy” isn’t even recognised as a word on my computer, I guess it’s not just humans we have to educate about our illnesses.

There are a few main types — psoriatic arthritis (now more well known thanks to the diagnosis of a naive Kim Kardashian who was so grateful it wasn’t lupus), reactive arthritis, ankylosing spondylitis, inflammatory bowel disease and undifferentiated spondyloarthropathy. These are essentially all autoimmune diseases which need treatment, but which sometimes don’t leave a trace of inflammation in your blood, or in X-rays or ultrasounds; diseases which can show no swelling, no family history, no outward symptoms, which all have no known cause or cure. In other words, these diseases can be incredibly difficult to diagnose while causing very real pain, damage and depression.

A quick word on autoimmune arthritis — rheumatoid, psoriatic, reactive and all the other autoimmune arthritis’s are NOT the same as osteoarthritis — the wear and tear disease of old age. Autoimmune arthritis happens when your immune system inexplicably and mistakenly begins to attack your joints/soft tissues, instead of focusing on foreign nasties. They’re systematic diseases which can affect more than just your joints. They can’t be cured with rest, ice, knee supports, crystals, prayers, turmeric or actually any medically prescribed drugs. Remission is all you can hope for at the moment — i.e. a medically induced period of low disease activity, or for the lucky ones, a non-medically induced period of low disease activity.

Realising there’s something incurable wrong with you is a difficult thing to get your head around. I’m 29 years old and I hoped I had reactive arthritis, which can be triggered by food poisoning/genetics & sometimes completely disappears after a few years. But now I’m not so sure. My first flare happened around 2 years ago. Being faced with something that completely floored me was absolutely terrifying. I knew it was serious, but other people couldn’t see or understand. It’s not only physically traumatic but mentally incapacitating. Sadly this year after a really stressful month, my symptoms have returned. One of the hardest parts about this is not knowing when a flare will end, not knowing what damage is permanent and not knowing what, if anything, will make it stop.

What I do know, is what makes a flare start. Stress has been a huge trigger for my disease, and all of my stress I can trace back to things that happened in my childhood. I feel like I’m being doubly punished for things which were all completely out of my control.

What makes it harder is that I feel like I already dealt with childhood issues years ago, but unfortunately there are some difficult things which still effect me as an adult. I struggle to sleep at night because this has always been the time of day where I think. The more I think the more I feel sad. This has made me avoid being on my own because a lot of the time growing up I spent time at night alone, crying, wondering if anyone really cared enough to notice how lonely and unhappy I felt.

In my adult self this has actualised as fear of abandonment. I also have a great deal of empathy and desire to make sure other people don’t feel as I felt. I over give and over care and often don’t feel the same is returned. It’s unhealthy as most people don’t need this sort of care, so I constantly set myself up for more hurt & rejection, a cycle lots of people who’ve experienced childhood trauma inescapably fall into. Dealing with a low-level of constant stress I think has been fundamental for me developing this disease, and it seems to be the main trigger for many people suffering with autoimmune issues.

Right now my future seems bleak and I keep having dark thoughts. I don’t want to be disabled. The dreams I had for my future seem out of reach. I wonder whether I have some genetic predisposition which means I should reconsider my plans to have a family — something which I always thought would heal some deep-seated wounds for me. I’ve always wanted to prove that you can have a career, be in a stable relationship, and have time for your kids. I felt like I would’ve been a really good mum. But now I’m ill, I think people will see me differently — I see myself differently. Ironic really considering I have an invisible disease.

I feel like I’m mourning the person I was and could have become and now I’m left with the harsh reality of living in what feels like a nightmare that I can’t wake up from.

Everyday when I walk and feel fibres of my ligaments or muscles in my legs fraying, followed by sharp pains in my both my legs/knees, I’m reminded of what I’m losing.

If it progresses or I have to take life altering drugs (once I eventually get a diagnosis), I’m not sure how I’m going to cope. I’m not sure I’m coping now. I feel like I’d rather not be here than go through this and I’m sad to admit that ending my life comes into my head a lot. I wonder what I have to offer the world now.

What amazes me is that before this I never really thought about what an autoimmune disease was. My aunty (not blood related) has lived with rheumatoid arthritis for years and has been on a cocktail of different immunosuppressants all of her adult life. She’s happy and she has a family who are healthy. She seemingly deals with her diagnosis and gets on with life so well. This does give me hope but also makes my current mindset seem shameful — why can’t I just accept my own autoimmune disease, be strong, and move on?

There are millions of people worldwide suffering an invisible disease. We all look healthy on the surface. I’m still one of the lucky ones, in many, many, many cases, people are suffering with unfathomably more serious symptoms than I am currently. I really pray (I’m not even religious) for all of us and hope that one day a cure becomes available. In the meantime I’ve got to try and find a way to accept who I am now, and who I might potentially become in the future. After all, we’re all going to die of something — it’s just a strange feeling to know how your life is likely going to end, at such a young age.

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