We are lucky to live in a world where most conditions are treatable, and as many slogans go “beatable”. For many of us our experiences of illnesses have been followed by effective treatment leading to remission. If I have a cold or flu I know there are tablets I can take that will make it go away. If I break a bone I know a cast will help knit the bones back together and leave me, hopefully, with full function in that limb again. This is a model that certainly in the UK the NHS and ministers understand.
What then if your condition has a murkier prognosis? What if there is no cure or a high chance of repeated relapse? It’s not only then a struggle often for the treatment and management needed but also a huge philosophical concept to bend one’s head around. It’s also, I’ve found, a difficult one for friends and family because they can’t “fix” it and that hurts.
Many of you will be aware of the “spoonie movement” which was originally created for those with chronic physical health conditions, hence when I was always restrained in my use of the word and felt uncomfortable labelling myself as part of that community.
However my mind is changing on that front.
I have been ill for 20 of my 26 years on this planet, I have approximately 7 conditions and have had more treatment than most and yet here I am, still chronically ill.
My issues are around my mental health, although some conditions are now in remission I still struggle with Major Depressive Disorder, Anorexia Nervosa, Generalised Anxiety Disorder and Obsessive Compulsive Disorder.
Right now it’s Anorexia and Anxiety that are majorly kicking my ass (to use non medical parlance), I am currently in my third full round of treatment and admittedly it is much more intensive than I have experienced elsewhere (thanks postcode lottery) but so far it’s barely scratching the surface. I have been ill so long I don’t have a “before” to remember and strive for. In fact research suggests that if an Eating Disorder is present for seven years your prognosis is not good – so with 13 years under my belt I’m not feeling hopeful.
I spoke to an Eating Disorder consultant recently who reintroduced me to the term “SEED” or Severe and Enduring Eating Disorder. One of her patients was offended by this – “I don’t want to be a seed, I want to be a flower”. I think this is very powerful and says a lot about our chronic patients – we often feel like a burden and hopeless – something I myself experienced when my CAMHS team aged 17 told me they had “run out of options”. As chronic patients we are fully aware we are difficult and complex but please don’t throw up your hands and give up on us. And please, we’ve been living these conditions for a very long time so take us seriously.
This is also why I’m seeing a strong backlash in the mental health community against the “recovery” movement and also the government’s seeming need to define “recovery” as “in work”. Recovery is fabulous and we should strive for the best for our patients but let’s not give false hope. Some of us, may never recover. We may take medication for the rest of our lives. We may have to surf the waves of our illnesses ad nauseum for decades.
12 sessions won’t fix us.
Living with a chronic illness is bloody difficult to say the least, I would offer a day in my shoes but you would know you could take those shoes off at the end of the day. I can’t. There is no real comparison.
There are points we cope well, we say “f*** you” to our bodies and fight for what WE want, even though this often ends up in a body backlash (case in point I slept 19 hours after a 2 day trip to Manchester recently”). There are points when either through medication or the boom/bust cycle many of us experience we can function like “normal” human beings. And we rarely “look sick”. When you see us and tell us how “well” we look it’s probably the first time in awhile we’ve been able to leave the house. For more on this check out the brilliant But You Don’t Look Sick.
However there are points, and I’m sorry to say I’m here now, when we get desperate, when something snaps.
I feel lost and hopeless right now. I have had 10 years on and off of almost every therapy NICE approves, I’m 31 weeks into an experimental non NICE approved group therapy, I stopped counting when I tried the 20th medication, I’ve tried everything over the counter and even tried Acupuncture. I’ve tried to sign up to experimental treatment studies including TMS, I’ve taken meds that I shouldn’t due to contraindications or legal issues because anything is better than how this feels. Which of course leads to risky behaviours.
Some doctors are sympathetic (thankfully my current one is) and if you find a good GP cling on for dear life. A conversation with a previous GP went like this:
Me: Well if you won’t prescribe me benzos, I’ve tried every other med under the sun that I can, what am I meant to do to deal with my crippling anxiety while also working full time, commuting and trying desperately to keep a roof over my head?
GP: Just cope.
Chronic illnesses are sneaky too. I thought I had come to terms with what I had done to myself some time ago – more around my scars. Now though, age 26 I am beginning to experience more of the physical side effects and it’s currently having a very detrimental effect on my work and relationships with friends and family because I am not strong or well enough to do basic tasks that were once a piece of cake.
Currently I am struggling massively with fatigue, constant aches and pains and raging anxiety which means headaches, uncontrollable shaking, brain fog and many more very physical symptoms – bolstering my argument that this mental/physical health divide is bogus.
Having a chronic condition means redefining your “normal” and managing your expectations. Maybe once upon a time running 10k was an option, maybe today you should applaud yourself for just getting out of bed. It’s tough. I know, I have tried but when you have low self esteem it can be hard to see boiling a kettle as an achievement.
I don’t know much admittedly but I would recommend above all:
- Find a sympathetic GP and work with them to build an understanding health team around you
- Talk to your friends, don’t withdraw or cover up what’s happening – from my experience you will be surprised how many understand and will support you. Some won’t, some may withdraw, that will hurt but ultimately show you who your true friends are.
- Find your “tribe”. I’ve been running support communities, mostly around mental health for the last 13 years and they have not only changed but saved my life. Find people who understand and won’t judge and lean on them when you need them.