What I’ve Learned From My Long Term Illness

Spoiler alert, it’s mostly not fun.

I have suffered with long term mental health issues for about 15 years now (Jesus is it that long? Yep, yep it is…) but I developed related physical illnesses about 5 years ago which dramatically changed my day to day life and pretty much just upended how I thought my future would turn out. After having to cancel another fun social weekend because I’m too poorly to go, I thought I’d write about what it’s like to have a complex long term illness in this social and political hellscape and what I’ve learned.

I had just graduated from my BA in Applied Social Sciences Children and Young People, and after a very tumultuous time studying and working part time throughout, I got myself a job as a nursery nurse, my own flat, and it all seemed to be going roughly to plan. Then I collapsed at work, had a fun ambulance ride to A&E and eventually had to quit my job and move back in with my parents. Funnily enough, the same thing had happened 5 years previously, but as general tests had all come back normal, I was just left to get on with it. That time it took about 3 months to recover and be pretty much back to normal. The most recent time though, I think it’s fair to say I have never really recovered. There have been worse patches and better patches, but I am no longer capable of working, socialising or living like a ‘normal’ person in their late twenties.

So what exactly is wrong with me? Well, it’s not completely definitely been fully resolved, which is a significant problem in itself. What I can say is that I have severe depression, anxiety and PTSD, stress-induced hypoglycemia, severe oral allergy syndrome, and probably functional neurological syndrome. What it means is that I am prone to black outs, dizzy spells, sudden low blood sugar, panic attacks, flashbacks, nightmares, exhaustion, IBS, weight gain, and severe allergic reactions including a swollen tongue and mouth, stomach cramps and other icky digestive issues. Twice daily, I take anti-depressant, anti-anxiety, contraceptive and allergy medications, with top ups of anti-histamines throughout most days. So far I’ve had 9 different therapists and am in the market for number 10. Here are some of the things I’ve learned (in no particular order)

The medical profession is not set up to deal with complex illnesses that are both psychological and physiological

Despite the fact that it is well known in the medical community that psychological illnesses have a genuine effect on physical illness and vice-versa, the structure of the NHS makes it almost impossible to be treated as a whole person. Firstly, as hospitals are split into different departments all specialising in one area of the body, you get bounced around the place with no-one looking at the whole picture. Then, there is an obsession with numerical measurements of symptoms which rule out physical causes of illness but can’t take into account psychological causes of illness, despite the fact that our bodies react to psychological causes of ill health the same way they do physical ones. Very basically, it’s because our brains control the rest of our bodies responses, so for example, if you think you have eaten something you are allergic too, your body will respond with an allergic reaction, even if you actually haven’t eaten it. The cause may not be ‘real’ but your bodies’ response to it certainly is, which is why you can show symptoms while showing ‘normal’ test results. That means if all your tests come back ‘normal’ what usually happens is you’ll just be passed along to another department or back to your GP. Which leads to…

Stigma about mental illness is alive and well

I cried almost hysterically when the hospital eventually told me my symptoms were most likely to be caused by mental ill-health, not because I wanted a brain tumour, but because I knew that mental health issues are not taken as seriously as physical ones, and that services were even more sparse, so I would be waiting a long time without the help I needed, and I was right. Physiological symptoms that are real and have a psychological cause (like black outs or low blood sugar) have the same effect on your body and crucially have the same danger associated with them. If my blood sugar drops because of stress, the danger of a black out or a coma is the same as if it was caused by a physical problem with my insulin production. I can’t raise my blood sugar by calming down a bit. I can help stop it getting low by reducing stress, but once it’s low, it’s a physical problem which needs a physical solution.

Unfortunately, some medics still dismiss the seriousness of a physical illness if it has a psychological cause, or even if they just learn you have a mental health issue. They assume you are a hypochondriac, that your symptoms aren’t that bad, or it’s ‘all in your head’. The irony is that some people with mental health issues are actually better at distinguishing between for example, a panic attack and an allergic reaction that causes breathing issues, because they’ve had panic attacks before and know that the allergic reaction feels different. Speaking of prejudice…

Fatphobia is definitely a thing and effects the quality of your treatment

I used to be a thin person. I used to be physically seen as healthy and fit and as a result, my experience of going to the doctor was that they focused on what I said was wrong and not on my weight as a cause of any and all problems. When I started to gain weight as a symptom of my illnesses, and eventually became what is know as ‘plus size’ suddenly my weight was a problem itself, and the cause of the other problems. After repeated visits to the hospital and GP saying I was still ill, and I still didn’t feel like we’d got to the heart of the cause, and that was getting worse, it was only when I reached ‘plus size’ that my weight was even a part of the discussion. With the same symptoms as a thin person, it just wasn’t considered as a factor. So it has been very frustrating to have my weight be presented as a problem I need to fix when it’s a symptom of the problems I’ve been trying to get treatment for for literally 5 years now.

There is a bad time to be ill and it’s definitely now 

Unfortunately for literally everyone involved, now is a pretty shit time to be ill and to need long term healthcare because services are stretched to beyond bursting point. I try to remember this when I get a slightly peeved reaction from healthcare staff or can’t get the treatment I need, but what would really help is if we could all openly acknowledge that it is the system being under-resourced which is the problem, not the individual patients. I’ve had a paramedic tell me I’m wasting everybody’s time after I was told to call them out by the pharmacist, and then imply that I did it because of anxiety rather than advice given to me by a medical professional. And I’ve been dismissed by my GP because each individual issue on it’s own is not actually about to kill me right now, so it’s way down the list of priorities. There is no time or head-space for practitioners to see the whole picture, and how a combination of not-immediately-lethal health issues can chip away at your quality of life and leave you stuck, and eventually, more ill. This is especially problematic because medical professionals can end up being gatekeepers to the help you need and the ‘proof’ you need to provide to get benefits…..

Universal Credit is as bad as you’ve heard 

It really is though…… it is designed to be as discriminatory as possible and even if you end up getting officially recognised as disabled, it only takes the pressure off a little bit. I constantly feel like screaming WE ARE WORTH MORE THAN OUR ABILITY TO WORK YOU BASTARDS *deep breath* However, as far as my experience goes, even the work coaches know this, so they have actually been very nice to me while they tell me there’s nothing they can do. And honestly it does make all the difference. Everyone wants to be treated as a full human being. However….

It will fuck with your identity

A lot of the things I thought about myself that I considered being inherently ‘me’ have been stripped away by this illness. I’ve lost things I didn’t even really think about before. Before I was severely ill, if I said I would be somewhere, or do something, I would, I considered myself a reliable person, at work, school, uni, with friends- it was part of my me-ness. Now I just can’t be that person anymore and it sucks and I hate it. I have had to accept that if I agree to do something I may have to cancel on the day because I am too poorly. Fortunately I’m actually more comfortable being an introvert than I thought I was, I can spend most of my days working from home and I don’t mind. But I miss feeling like I have the option to go out and be sociable if I want to. Things that didn’t bother me before like crowds, noise, being out of the house all day, walking any significant distance, going out in the evening, are now things I rarely do because most of the time they feel way too overwhelming. I hate meeting new people because I don’t know if they might trigger me in some way. I get exhausted for days after a event like a wedding or sometimes even a phone call. Sometimes it feels like I’m so far behind my peers in terms of ‘normal life goals’Public transport is a twatting nightmare (made worse by, again, service cuts) Everything feels scary.

And worse you’re trapped with this weird sense of ‘ill you’ and ‘well you’. I feel like I have to put on a front of ‘well me’ to do everyday things and be treated as a person and not a contagious mess of pathetic-crazy. I want people to be able to see my skills and abilities, the knowledge I worked so hard for in my BA and PGDip in Women Violence and Conflict, and my experience as a service user that means I have insight and expertise about mental health and society (and sometimes more than the front line staff I meet) as well as being someone who is seriously ill and needs treatment. My life feels like a bundle of contradictions; on benefits but with my own business, unable to do a ‘normal’ job but knowledgeable, experienced and intelligent, still living with my parents but with a stable partner, resilient but vulnerable…. The problem isn’t me, its that as a society we haven’t got a nuanced understanding of how human people are actually multi-faceted and not reductive stereotypes. Once we see people as individual humans we can, but it can feel like a lot of work and a lot of explaining yourself to get there.

However, if you do let nice, kind, compassionate people who have shown they are trustworthy see the full awesomely fucked up mess of a bright shiny human that is you, you will have the most amazing bubble of friendship happiness to float in and it will be totally worth it.

It’s weirdly freeing when you have nothing to lose

As a final point that is a touch more hopeful, the one thing I can appreciate is that I have done things I never would have even thought of if I hadn’t been ill. Now, this is where I know I am extremely lucky; I don’t have a family to support, I can rely on my parents, and I have the privilege of a university education. All this meant that I had the time, while I was first poorly and all my plans had gone to shit, to really think about what I wanted to do. I was also restricted by what I was able to do, but I don’t think I would have done my PGDIP in Women, Violence and Conflict without that space to re-asses. Even afterwards when I was ill again, and having become more severe since then, I’ve still got my own little business that I’m plodding along with, which wouldn’t even had entered my head before. It didn’t really feel like too much of a risk because I had nothing to lose; I wasn’t giving up a regular income or career I’d built up because I didn’t have one! I’ve found something I love doing that I can tailor to my needs and skills, and thought it can be difficult and frustrating, it’s also amazing and lovely.

I’ve become a lot more comfortable with taking my own path and not knowing how it’ll end up

Not completely comfortable, but definitely more so than I ever have been. I’d always make plans and have a set idea of how I wanted my life to be, and now, I just can’t. I barely know how I’ll feel tomorrow so any long term plans are just pointless. And that’s not even considering the Brexit-Trump-Tory- hellscape that influences our lives on a structural level. So I just keep plodding on, taking it a day, week or even month at a time if I’m feeling really brave, and fall back on the resilience I’ve developed along the way to reassure me that whatever comes next, I’ll deal with it. There are some things I’d like to be 100% certain of ideally, but since I can’t be, well, fuck it. Let’s just do what we can now and the rest will wait until tomorrow.

 

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