So what exactly is wrong with you? This question comes up a lot. Doctors ask it (even though my complete medical record spanning a decade is sitting right in front of them on the computer), friends ask it, and family members also ask, but only rarely. Most of the time no-one asks, or shows much interest. They think that when I am sick I am feigning it to get out of something, or because I don’t like them. Truly, people have said these things about me. Family members mostly. Because I don’t have a neat diagnosis after more than a decade of illness (yet), they think it’s all in my head, or really minor, that it doesn’t affect my daily living (it does). That I’m overweight because I’m lazy and a pig, not because my thyroid is being attacked by my own immune system and my hormones are out of whack.
I cannot tell you how infuriating being chronically ill is. Not just the illness, but the reactions (and non-reactions) from society, doctors, friends and family. No matter how many times I tell some people I’m chronically ill, they seem to forget, minimise my illness, or think I’ve somehow healed since I last saw them. Like normal people heal from a bout of acute illness. People I’ve never met see photos of me online and assume I’m well because I don’t look that sick. The strangest thing is when (some) other chronically ill people dismiss or minimise my illness, or forget about it, or carry on as if their sickness is somehow more important. That really sucks, because you might expect to find at least some sympathy from these folks, if not empathy. Sadly that isn’t always the case. More often than not such people try to push (and by that I mean shove) their own treatments and ‘cures’ onto you, which at a superficial level might seem thoughtful and kind, but it usually means that they are conflating your problems with their own, and thinking that you are somehow identical (both in body and symptoms) and will respond identically to their suggested treatments. Sometimes this can be really helpful, and sometimes it’s really not. It all depends on how it is done. One very kind friend shared some really useful advice and suggestions and that was really amazing: I felt heard and cared for, and not alone. But some people just think they know best, and will act as if they know more than you and your doctors combined. They hammer you with information and check up on you to see if you’ve taken their advice. They get offended when their suggestions aren’t taken or when they haven’t helped you. That is offensive and annoying. To those people, I say: my body is mine and it is different to yours. I also know my body better than anyone, doctors included. Please respect that.
Without any further ado or any more analysis, I would like to present you all with a laundry list of the things that are wrong with me (medically speaking). Print it off and stick it on your fridge if you like! Save it to your phone! Nah, not really. I’m not looking for sympathy here, nor do I think my illness should be that important in your life (unless you’re close to me), I’m just sick of being sick and sick and tired of having to regurgitate this information over and over to the same people, especially those who insist on minimising my illness and how it affects me. So here goes…
Current medical symptoms/conditions:
- Endometriosis (likely – must be confirmed by laparoscopy, but symptoms are highly suggestive of the disease. Three separate gynaecologists have diagnosed it to be likely over a period of 14 years)
- Ocular hypertension
- Moderate-severe daily eye pain resulting from a laser procedure to alleviate ocular hypertension in 2015.
- Dry eye/ blepharitis/ red eyes/ inflamed eyes/ allergic eyes
- A dry mouth when I sleep
- Chronic mouth ulcers, which come and go when I eat certain foods or have other symptoms.
- Elevated thyroid antibodies/ hypothyroid at times
- Elevated antiphospholipid antibodies
- Joint pain (better than it used to be). This was seriously debilitating for a period of 8 years – knee, hip and back pain. I could barely sit at work most days, or in a cinema, or on a plane. Now I deal with wrist and finger pain mostly, and neck pain.
- Gut pain – possible bowel disease? To be investigated further. Crohn’s disease has been suggested as a possibility.
- Tight muscles and nerve compression leading to dead arms most nights. This is not pleasant and interrupts my sleep.
- Iron and vitamin D deficient without supplementation
- Sensitive or allergic to many foods: gluten, tomatoes, chocolate, kale, quinoa, beetroot, buckwheat, wine, nitrates?, eggs?, dairy?, alcohol?
- Allergic to pasture grasses, smoke (all kinds), mould, fragrance
- Eczema and rashes
- Unexplained weight gain
- Severe depression
How does this affect me? I cannot work and haven’t been able to for five years. My mental health isn’t good, as a result of the illness and the isolation and the lack of support I’ve received. It’s a lonely road. I cannot plan ahead for the future as I don’t know what I’ll be capable of. I almost certainly can’t have children, and probably wouldn’t have been able to earlier even if I had tried. The eye pain and allergic component of my eye pain makes it difficult or impossible to do many normal things: wear makeup or scented products, be around dogs, or in other people’s homes even, live in the country (allergies, smoke, farm chemicals), live in the city (due to pollution and other things constantly bombarding my system), use a computer due to eyestrain, use air conditioning as it dries my eyes, etc. etc. It feels like everything is attacking my body: from within and without. It’s exhausting and I’m exhausted writing this. But at least I have a neat list now that I can present to doctors and naysayers alike.
I’ve looked after my body well, and that’s the really sad thing. There will always be a sense that my body has betrayed me. Or that I’ve been unable to avoid my genetic inheritance: my mother shares many of these health issues and for whatever reason they have been triggered in me. I used to be slim and so very healthy. My skin was radiant and I had vibrant energy. I’ve always eaten healthy food, exercised regularly (I’ve never owned a car and walking and riding bikes was a regular thing for me), never smoked or used drugs and have rarely drunk since my teens. Nevertheless, it seems that illness can still happen to those who treat their bodies well.
It’s a constant struggle to be me and wake up each day and work out what to do with this life, a life that feels like it’s been cut short, and I never know when the pain will strike. I just know that it will, in one form or another, most days, and that it will affect my day and my plans and the sense that I have control over anything. I’m not naive enough to think that I should have control, by the way. Chronic illness has taught me that at least. It’s also taught me to enjoy the time I have, if possible. I have good days, but rarely do I have pain free days. Sometimes it happens, and it’s a miracle, and I remember what it was like to once feel that way all the time. It was bloody marvellous.