I remember when I was in my pre-teens and I began struggling with my physical health; headaches, infections and allergies etc which where all quite debilitating at times. My mom took me to a GP who was also trained in homeopathy and we tried excluding things from my diet as well as different homeopathic medicines.
The dieting made some difference but as time went on my allergies would just change. Sometimes I couldn’t be near dogs or horses and sometimes I’d be fine. Sometimes tomatoes would give me a headache and other times not. During my teens I began experiencing pain and fatigue but didn’t realise that this wasn’t normal. I put my fatigue down to poor mental well-being and thought I was depressed. Today I can’t help thinking that maybe it was the other way around… Being a teen-ager and feeling exhausted, overwhelmed and unable to do what your peers seem to do with ease is bound to affect your mood and self-esteem.
Since I left home have gone to the doctors every 2-3 years to try and talk with them about my struggles with allergy, fatigue and pain. For many years in Denmark and now in the UK. Most of the time I leave with the feeling of not being taken seriously. The doctors listen and talk at me about depression or anxiety and anti depressants or refer me to a physiotherapist for my headaches. When I am lucky they reluctantly have some blood tests taken which sometimes show I have allergies and sometimes not. Other blood tests are always be within “normal” so nothing further gets done.
I always wondered what this “within normal” is supposed to mean. Nobody would ever tell me if I was bang in the middle of the perfect average score of “normal” or possible too much to one side or another, near that magical line that would make my results “not normal”. Cause maybe, just maybe, when we fall within the range of normal the numbers might still tell us something about the state of our organs, physical processes and whether things are functioning optimally. But who am I to suggest something like that.
The most exciting thing to have shown up in my blood tests was last year when my D-vit levels where worryingly low. Not that taking D-vit then made a difference to my aches and exhaustion but it did seem to help my cognitive functioning.
I struggled with allergies from the age of 9 and regularly asked to get referred to a specialist. This only happened in 2012 when I was 31 and I began having swellings around my mouth for which I had to go to the emergency room to get steroids. I am still baffled at how this was what if took to get referred.
The specialist was good, though she did want me to get these expensive allergy vaccines which I ended up declining. What she did well was help me look at my diet and my histamine intake. Her whole take on diet and autoimmune conditions was really helpful and it was with her help that I managed to get on (and stay on) a wheat/glutenfree diet.
The diet has made a difference to my stomach problems and the nausea I have struggled with as far back as I can remember. And overall my body seems less stressed out when I eat glutenfree.
But it hasn’t made much difference to the pain and fatigue.
Sometimes I want a diagnosis just so I can find a community to join and get support from. Also I want my limitations to be taken more seriously when trying to navigate the work world.
But sometimes I think a diagnosis might help me take myself more seriously too. Because I seem to have internalised this attitude which I keep banging my head against – whether it’s at the doctor’s, in educational spaces or in the general public – that it is all in my head. That it’s a “mental” problem not a real physical experience. Parts of me seem unable to accept my physical limitations and I will at times judge myself harshly for not doing more or doing things differently.
Somehow it doesn’t seem to matter that for years enormous amounts of people experience these very real physical things; irritable bowel syndrome, chronic fatigue, fibromyalgia, migraines, psoriasis, adrenal gland and thyroid problems to mention a few.
Doctors I have come across seem extremely reluctant to refer to diagnostic assessment. Why I don’t know. Maybe it’s because they can’t make the diagnosis in an – for them – acceptable evidence based medical/biological way. Maybe its because the only thing they can offer as treatment is lifestyle changes and if you’re lucky SSRI’s and pain killers.
Today it was suggested to me by my GP that getting a diagnosis would only exasperate my symptoms! This quite nicely sums up my “normal” experience of trying to be taking seriously and I’m appalled. To me it feels like a slap in the face and a not very subtle way of saying “what you’re experiencing is in your head and if I collude with your delusions you will only get worse”… In the situation I didn’t challenge her on this as I spend quite a lot of energy just engaging socially. So often it’s only afterwards I realise how utterly frustrated I feel when I have been treated with condescension.
In Denmark I thought the way I was being treated by doctors was a result of having several mental health related diagnosis in my medical files. I used to just feel grateful that I didnt have more serious physical problems because I knew of friends who’s complaints – which turned out to be very serious problems -weren’t being listened to because of mental health diagnosis.
But now in the UK I am coming up against the same attitude and I don’t have a record of mental health problems here. It seems that there is something about certain conditions that just doesn’t sit right with the general doctor. Because with anything else I have gone to the doctor with here in UK I have been treated well and I have been impressed with and grateful for the NHS.
Maybe they think that by refusing to help me get a diagnosis they are guarding me against falling prey to all the “horrible frauds” out there… All the companies selling non medical treatments, supplements, wonder-diets, crystal-healing, protective pyramids and all kinds of stuff not sanctioned by the medical profession. Or maybe they think I will use a diagnosis to cheat the system and become a scrounger.
But their intention however protective – of me or others – is not actually doing anything, except making me feel once again wonderfully talked down to and stupid for trying to make some sense of my physical struggles and get some support with it.
At the moment some people are making a link between HSP and autoimmune conditions but after looking around on the internet it looks as though much of this comes from people who offer solutions such as EFT or Chinese Medicine. I truly hope that these interventions help a lot of people but I still feel uncomfortable with the idea that all I am experiencing is just a matter of blocked energies, unreleased emotions or stress…