A few months ago an old friend of mine was diagnosed with relapsing remitting multiple sclerosis.
Stigma and ill health
But one thing interested me enormously. She has decided not to tell her family about her multiple sclerosis. Clearly it is her choice and she has some very good reasons not to do so.
That being said it has led me on a train of thought about the subject of openness about medical conditions to family, friends and employers.
For full disclosure I should explain that I am the parent of a son with classic autism. It took at least two years from diagnosis for me to be happy (if that is the right word) about being open about his autism to anyone but very close friends and family. Now I’m very used to explaining his diagnosis in new situations to explain his behavioural challenges. That being said this did take me a long time to get used to. So I understand why people keep quiet about it.
For example we ran a poll a few months ago asking if people felt that they had been discriminated at work because of their medical condition. As of writing just over 70% of respondents believed they had been discriminated against. You can see the results of the poll here https://patienttalk.org/?p=852.
But and there is a but here. If we are silent about our and our loved ones medical conditions does that not mean we are allowing the stigma of illness both mental and physical to remain?
So really I’m opening up the floor to you.
It would be really great if you could share your thoughts on health and stigma?
a) Have you been diagnosed with a chronic condition?
b) Do you feel there is a stigma attached to that condition and if so why does it occur?
c) Are you open about that medical condition to family, friends and workmates?
d) How is it best to fight any stigmas and discrimination which may go hand in hand with health issues?
Please feel free to share your thoughts and view on the matter. Feel free to use the comments box below to answers the above questions or add any of your own.
I do not think it is as much a stigma to the disease as it is the people all of a sudden meeting their own deficiencies and then blaming you for it. Most of them are not interested in really finding out what the disease is about and then they treat you with pity. Instead of giving you the support you need they rather blame your illness for what you cannot do. I would also rather keep quiet and in most cases I do….
I was honest with immediate family and my 3 closest friends. It took 9 years before I told other fairly good friends. I only told bosses in 2 previous jobs one after I was let go and the other time when I needed time off due to stress. It is a hard decision to share something so private – and within the work scenario I fear whether it will assist or hinder.
I was honest about a known or little known illness. My whole family has varying Auto-Immune Diseases. Family members have shunned us, they do not want anything to do with us….no contact, few if any phone calls etc. They call me “A Debbie Downer!” My husband has Cancer X’S 2. The first time he lost his job! It has been down hill ever since! It is not worth discussing any type of illness. As soon as I did I lost all of my friends. It is very lonely living like this. If one of us dies I don’t ever want to hear ANYONE say WHY didn’t you call or why didn’t you tell us. I swear I’ll punch them in their face!
I’m not sure if this applies. I was diagnosed with Fibro April this year. Husband has a hard time dealing with it sometimes. Hates seeing me take meds for anything. I have suffered from depression for a long time. For years dealt with it on my own. But started needing help handling it about two years before I started having fibro problems. One of the things he would complain to me about is not know how meds will affect my body. Could damage my liver. I thought i am so miserable without meds I choose that route. Now my liver enzymes are elevated and my dr is running tests on that and this has made me very nervous. I have chosen not to tell husband or family about this even though I am very concerned. Feel like I will keep this one to myself for as long as I can. Waiting for test results. Hope they turn out good :/
It is just discriminatory! It is a lonely journey. It is not fair. I am sorry for your problems! Fibro has finally proven to be a legitimate illness not just “all in your head” as was once thought! I pray your tests come back ok! One thing you might want to try is to find a clergyman or mental health person MSW to talk with to make you feel better! Men have a problem being unable to fix women when they have a problem. I bet if your situation was reversed he would accept your support and be taken care of!