I had an interesting conversation the other day regarding my diagnoses and the problems associated with ‘invisible illnesses’. I remember the days before I received the definitive diagnosis and going from doctor to doctor, desperately trying to find an answer…and reading the body language and expressions, of doctors and of people I knew who clearly thought I was making up my symptoms and the problem instead “was all in my head.”
I am sure many of you reading this out there can relate to that, and unfortunately it is often the case that as soon as you are labelled by doctors as being a ‘hypochondriac’ or the problem caused by a psychiatric problem, it is extremely difficult to get them to take you seriously or even to look beyond that train of thought. I know it is often the case for people living ‘Chronic Fatigue Syndrome’ (ME) to find a doctor willing to listen and to take their problems seriously, especially as there is still a lot of debate whether the condition even exists which must be so frustrating.
That is the problem with today’s society – just because a person does not look sick then they cannot possibly be ‘sick’ – whatever happened to the proverb “just because you cannot see something, it doesn’t mean it’s not there”.
Then we came to the discussion about whether my illness can be still considered invisible – considering, that when I am out and about I use a crutch and hanging onto one of my parents to stop me from falling. Recently, I took a taxi, the driver of which I have not seen for some time, and he asked me what I had done to my leg. Even, with the crutch, people may assume I may have hurt my leg in some way, and may not be permanent. And even when I do use my crutch, I do get the occasional stares, as if they are questioning why I need to use one. As my legs are very stiff at times, it obviously makes walking difficult and often walk with some limp, or often will stumble or fall due to many different reasons – weakness in the legs, dizziness and my problems with balance.
Therefore, can be illness can still be described as being ‘invisible’ taking into account the crutch, and the other problems that I experience?
Please feel free to comment below on the post and any comments, share your experiences and what you feel about regarding ‘invisible illnesses’….
Comments
I have to admit that since I have been using a cane, it makes my MS not as “invisible”. There seems to be more freedom in using my cane or wheelchair because there is no doubt that I have a physical challenge. I get looks and stares for different reasons now. Before using my cane, I would get stares or nasty comments if I parked in a handicapped spot. Now it is “validated”. It’s sad that it still hurts us when people say nasty things or stare, but I guess we are ALL guilty of doing these things, even unintentionally at times. We need to be patient with all people.
Thanks for the reply Michele! Yes, I also feel that when I use my crutch, which when I go out is all of the time, I would say my difficulties are much less ‘invisible’ as they were, then they are other times when at the centre where I volunteer when I am sitting down, and I look fine or ‘normal’ and thenn people see me with the crutch and having trouble balancing, etc and they are shocked at how ‘bad’ I actually am. You are right, we all guilty at one time or another making judgements about others – a child having a tantrum at the supermarket may not be ‘naughty’ as they are often labelled but suffering from autism or something similar… I guess we all have to learn to be more understanding towards others and less judgemental
The question of why so many doctors still have this very negative attitude to chronic illness is interesting. Let’s say for example that a person’s suffering IS caused by a psychiatric/psychological disorder, that person is still suffering and needs help! Unfortunately, the way medicine is taught there is still a separation between physiological disorders and psychological disorders, whereas any disease will will have aspects which apply to both perceived divisions. In reality human beings are both physical and psychological and to maintain such a strong theoretical separation is simple archaic. Further, the type of people who tend to get pushed towards medicine as a career are usually from status concerned middle class families who expect their children to succeed in a “profession”. Therefore there is a lot of competition between doctors, and doctors themselves, brought up in an environment where they received strong introjected values towards success, either from family or school/university, will find it very difficult to admit “failure”. In fact to do so would strongly challenge their success oriented self concept. Therefore, if they cannot make a clear diagnosis, or worse cannot treat a specific illness, they will tend to deny that it exists, and blame the patient for having “psychological symptoms”. A solution? The medical profession needs to become far more person centred and young doctors need to be given the freedom to admit failure. The problem is that only the medical profession can change this themselves!
Thank you Andrew – you may made some excellent points, and I also feel that more needs to be addressed for those suffering with psychiatric and psychological disorders and should not be treated any differently than physical illnesses – especially as many psychiatric disorders can be due to faulty brain chemistry or other problems in the brain itself.
Fantastic! I am working on a similar blog post. When I am using my sticks to walk around the neighborhood I feel that everyone I encounter knows I have an illness. When I am at the grocery, mall, etc. sans sticks I feel like I am hiding a huge secret.
Much love,
Marissa
Thanks again for your support Marissa!! Very much looking forward to reading your post on the subject and your views on it!! xx
Rhiann,
I read this post and the comments a few days ago, but this is the first time I have been able to sit down at my computer to write a blurb on it…sorry for the delay.
I really liked this article and found myself nodding in agreement most the way through reading it. I even brought the point up to mu Mum and she also fully agrees.
It took a lot of persuasion from a few people for me to agree to get a cane, let alone use it. Now I use it every time I go out. I agree to the point that the cane makes my condition less invisible. People extend coutesies to me now that before were not an option. I am even meeting people that I would have otherwise never met (which is turning out to be a good thing).
It’s kind of funny when Mum and I go out because she has a handicap parking pass because of her cancer but looks “normal”. I don’t have a pass and look like I should have one because of the cane. It actually works out well.
Now, if only I could get my doctor to realize that there really is something going on with me. Even with my cane, he still looks at me like I am “mental”. Oh this joys of having an invisible condition.
T ; )
Thank you Theresa, glad my post has caused some debate – it’s a really important to address, as there are still doctor’s out there who don’t treat patients seriously when they have something wrong which they cannot get to the bottom of, and then send you off with a label of being a ‘hypochondriac’ or complete ‘mental case’.
Thanks for the reply, as always!!