How to Deal with Stigma or Bias against Chronic Illness


“Pain is inevitable. Suffering is optional.” ~Unknown

Sometimes having a chronic illness can be like walking a lonely road…especially when people react to you in negative ways because they do not understand your illness.

I find myself these days often between two extremes: some on one end, over-protective and treating me like I am a helpless victim, ready to break and fail at any moment due to fragile health; and at the other end, some who are stressed by my very presence to some degree, because they fear what may happen if I have a medical emergency at some point while with them (read: seizure fear).

In the middle is me, just quietly plodding on and struggling to re-establish my personal balance, physically, spiritually, and mentally. The one end makes me feel suffocated, misread, and trapped, while the other end makes me feel like a burden, misunderstood, and something to be kept isolated for fear of causing stress. Both extremes create stress in me, and cause me personal emotional pain and frustration. The catch-22 is that this very stress reaction created in me can actually manifest the health crises these two ends of the spectrum fear they will see in me.

So – how do we deal with these extremes? Frankly, I wish I had a magic recipe for this. (Hmmm…I wonder if Hermione Granger is available to consult??? Maybe I should call up J.K.Rowling to ask.)

Here are the ways I have found that help me deal with the stigma and bias caused by chronic illness (especially seizure disorders):

1. Cultivate your compassion.

Be compassionate with yourself as well as the person creating the stress by their reactions. That person may not understand how their behaviour is affecting you. Choose to recognise that the person has a fear, and their fear is their issue – not yours.

2. Remember, you are NOT your illness.

Remind yourself that you are not defined by your illness, no matter what anyone may think, say, or feel. Only you can define who you are and what you are capable of achieving.

3. Practice non-attachment.

Keep a smile on your face and turn the other cheek. Do not allow your ego to become attached to anyone else’s fears or labels. Listen with an open heart where possible and remain true to yourself, non-attached to others’ issues.

4. Walk away if need be.

If the situation persists and creates increasing stress in you, you can walk away. You are not defined by other’s fears – don’t allow them to take hold. Choose to walk away.

“Believe nothing no matter where you read it, or who said it, no matter if I have said it, unless it agrees with your own reason and common sense.” ~Buddha

Namaste.

Carolyne

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84 thoughts on “How to Deal with Stigma or Bias against Chronic Illness

  1. ive had epilepsy with 30 years , since i was 8. i have sleep seizures. ive lived by myself since i was 16. im a strong, independent person who is well researched on epilepsy,. but i have to say 90% of the stigma ive received has come from medical staff. My neiuroligist is fine and i work with him to get me better. i push to get what i want in a world of waiting lists. i have no problem telling people i have epilepsy. If they dont understand, ill explain, if they take the mickey ill cut them out of my life. simple as. however at the moment it isnt controlled. ive had to get a vagus nerve stimulator so im in limbo at the moment with it as even though im on the way to getting it controlled again, it will take a bit of time. i was at the doctors yesterday, came out to reception where one of the nurses was. shes usually fine to talk to but shes always full of the pity with “u poor thing” “god love u”.. she then piped out yessterday with “u need someone to take care of you, u should be living with your parents or someone so they can look after u”…
    .I felt unbelievably insulted and felt like saying to her . yes i am poor cos i have a mortgage i cant pay for atm, I have a car that costs a fortuine to run, even tho ive been told i can go back to it if its avaialble i dont have my full time job at the moment, i dont believe in god and how dare u tell me i cant look after myself when thats exactly what ive been doing since 1989″…. Instead i said with a smile on my face “why do i need someone to look after me, sure they cant stop the seizures?”.. she said “yes but they can look after u”… i then said “Mary, ive been looking after myself for over two decades and im well able to look after myself and live my life, sure why dont u just bury me altogether”…. she then just exhaled , tutted with the kinda “god love u” look and said ” i dont know”…. i smiled and said “see ya mary”…..
    I was outraged with this. I am a fully competent person. Ive thought about saying it to her about how what she says is very insulting even if meant in good will. But then i realsied she would see it as an epileptic getting annoyed, rather than seeing it as a person stating an opinion to something she said. Basically she would think cos i have epielspy, i was having a hissy fit. Id be talking to a wall effectively. From now on when ever she asks how im doing ill just say “im fine”… i dont need that hassle.I only have to deal with her at reception….. Its complete ignorance on her behalf. She saw/sees the illness not the person. So even if it was said in goodwill, it was said with complete ignorance. Theres another nurse there that u go in, u get what u need, she says hello and at the end have a nice day… shes polite to u as a person and treats the reason u came in. shes more professional.

    • Thank you for having the courage to share this with us. You said it so cleary when you said “She sees the illness, not the person”. That is often the case…and it causes so much angst and frustration. Thank you for being so open and being willing to educate people as you do!

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  3. I have MS. I have to fight daiy it seems to hold on to my job. I don’t walk around wuth a “I have MS” stamped on my forehead nor do I expect to be treated differently, but fairly. I have an awesome family and support system, but their treatment can sometimes be overwhelming. I am the same person I have always been – same daughter, same sister, same co-worker – I just have a disease I can’t conrtol, predict or cure (for now). But I am blessed. Having MS has made me a better person – more understanding, compassionate and tolerant of others. I suspect all of you who have posted here are better human beings as well. When others treat me badly or stigmitize, I silently pray “forgive them Father, for they know not what they do”.

    TJ

  4. What you say is extremely true. It is more important than anything that we all keep positive in such a difficult situation. I have been dealing with asthma, eczema, and allergies for my whole life. 4 years ago in high-school I fractured my hip and have had a back problem ever since. At that point it does feel like you are at the bottom… at some points I couldn’t move or bend down. Its easy to feel lonely and depressed but with good family/friends it isn’t so bad. After multiple x-rays, ct-scans, and MRI’s the doctors didn’t have a diagnosis and gave me pain pills. After much frustration I ended up turning to alternative medicine of all things. Even a scientific mind like me would give up ‘western medicine’ because of desperation. After all, the risk is low after everything else doesn’t work. If anyone is reading this, please feel free to visit my blog (http://eltacodelmente.wordpress.com) where I talk about my experience, how I have improved, and how I am working hard to improve my own health. I would certainly be glad to answer any questions/concerns/thoughts.

    Henry

  5. I just found your blog and I was elated to find that you posted about living with a chronic illness and the struggles too. I am chronically ill with lung disease, an immune deficiency, and migraines. People do not understand because I look fine on the outside. There are many things I cannot do. I do manage to get to doctor appointments and I go to my children’s performances and such. I deal with intense loneliness as most women work and because of my limitations to get out and about. I don’t know how people keep their chins up. My husband does not begin to understand even if I am gasping for breath. I find this situation scary and lonely. How I long for the days when the children were small and more mothers were at home. Can you write about loneliness? Have you experienced it? Thank you.

  6. This makes me think of a book called “The Four Agreements”. It’s all about simple rules to live by to make your life less stressful and be true to yourself. One of the agreements was simply, “Never take anything personally.” It went into more detail of course about how everybody has their own reality they have to deal with and how their actions are more a reflection of their reality than yours, but after reading that, I became more aware of how personally I took things. Not that I was that bad about it, but in little creeping ways that I didn’t even realize. It was amazingly freeing to realign my thinking in that way, and simply say that everybody’s actions are a reflection of themselves and not of me, and just go on about my business.

    Relieving yourself of that burden, I’ve come to believe, is one of the greatest things a person can do for themselves.

  7. Your comments are so true. As one who has been diagnosed with MS, I greatly appreciate the motto ‘I may have MS, but MS does not have me.’ I am so much more than a person with a diagnosis. I appreciate your insights!

  8. Wish I’d seen this earlier and shared this with someone I cared for, someone who had been tortured by her loved ones who had failed to support her when she needed it most. Thank you for sharing, and your optimism and strength is most admirable.

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  11. Excellent post. I just came across your blog, and the simple elegant and direct manner in which you give us all excellent advice in living sanely. Hard to achieve all of these tasks ourselves, when healthy, much less when we are dealing with chronic illnesses, mental health issues and the like. Thanks you!

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  13. Great post. No-one needs a chronic illness. Some of us have them. Everyone can benefit from these insights, regardless. All lives have their experiences of pain, grief and loss. We all need the compassion we can give to one another. Keep strong!!

  14. Such a well written and thoughtful post. A lot of us going through (or who have gone through) problems in life can relate to this.
    Best wishes :-)

  15. Thanks for your inspiring post! I can easily relate to this as I have lived all my life with the residual effects of a disease that only hits one in a million people… :-)

  16. Thank you for your inspiring post. As someone who has lived my entire life with a chronic disease, I can definitely relate!

    And for anyone who feels alone in their illness, be encouraged by all of these other people who walk similar roads.

    Best wishes, Carolyne!

  17. Lovely post.
    I would add a 5th suggestion—Education.
    As several others have shared, I have bipolar disorder. I get the same spectrum of reactions and treatment you describe. If the people involved are important to me, if I will continue to interact with them, I have to address their misconceptions and teach them how to support me. Most folks are relieved to get a set of instructions instead of trusting their knee-jerk, fear-based reactions.

    This, too, is a form of compassion, because these people are uncomfortable and flailing. They want to be supportive, or at the least, not cause harm. Only we can show them how.

  18. This is a great post!
    My son has a chronic disease…cystic fibrosis and there is a stigma attached to that as well. As a mother, I see the social stigmas that come along with it.
    You have the people who dont realise the gravity of the disease because they think “well, he doesnt LOOK sick!” and then there are people who wont come near him because they are too scared that they will spread germs (or break him) or that they will catch CF themselves (pfft!!!). This is their own ignorance, and why I started my own blog!
    I want to thank you for your advice. When my son is old enough to see the ignorance himself, I will pass on the same message!
    Bella :)

  19. Great posting Hun. Have issues with physical and mental health my self I find it refreshing others cope in same or similar ways as I do Journalistically and humor are very healthy ways to deal with those issues Have a wonderful day

  20. Congratulations of being Freshly Pressed. Your post highlights the importance of empathy as well as pointing out that stigma against illnesses (abnd even disabililities) still exist in this day and age. At the same time, you are one strong person despite having an illness. Keep it up .

  21. Congratulations on being Freshly Pressed. It is sad but true that stigma against illnesses and even disabilities still exist in this day and age. Your post is a reminder on the importance of empathy as well as how you show that you are staying strong despite having an illness.

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  23. This is a great reminder for all of us, whether we have an illness or not. We all know someone who needs help in understanding this…and you’ve helped facilitate that. I am someone who, sadly, and even though I try hard, has little mercy for the chronically ill, and you’ve jolted my conscience.Thanks

  24. I am sorry to hear this about your family.
    Would you be willing to share your story about your step-mother on my blog? It is very problematic to find people who want to share stories about their stepparent! I only had one response :-)

  25. My cousin has MS, and I have a post dealing with MS and it’s relation to vascular disease on my blog, as well as other diseases. Try some of the tips on there to work overall health in the fight against MS.

  26. Great post! Non-attachment has been a very large part of my learning to live with my bipolar… it’s easy to get angry and exasperated with people… but it’s much easier in the long run to not explode… a messy business indeed exploding…

  27. Very, very interesting post. My daughter (who is 2) suffers from a terminal illness, and I know that as she gets older, she’s going to face many problems in society because of it. I pray that she develops your outlook.

  28. Thank you for sharing this. It’s something everyone faces at least once in their life, yet many are never given the opportunities to learn how to cultivate understanding and compassion for ourselves and others. Many blessings!

  29. You said it. I was fortunate to be employed by my friend Dallas who has MS–Sometimes there would be a call at 3:00AM and on the other end was Dallas. “Davi, I can’t get up can, you come over and help me out?” I was over there in 15-20 minutes and moving the bed away from the wall. Dallas go wedged between the wall and the bed and couldn’t get out, but we both managed to laugh and find a positive meaning to this situation. Hey, good days, bad days, we laughed and cried and laughed again. “Laugh and the whole world laughs with you, weep and you weep alone.” Hoping there will be a cure in our lifetime.

  30. Good post.

    I’ve got Asperger’s Syndrome, and the most useful thing I’ve found is to simply, totally refuse to be embarrassed or ashamed…people will take cues on how to act from you, and if you won’t be made uncomfortable, they have very little room to be.

  31. I understand the “fear” people have- I work with children, 2 of them have MS… the fear is ignorance. I love your attitude, and the first quote re: pain is absolutely inspirational… I will share that with people at work!

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  32. I also have MS and would like to add a fifth suggestion to how to cope. Ultimately, you are a soul with a body, and not a body with a soul. No matter what the disorder you might have it will not follow you past this lifetime, so try to love it, and then just let it go. I promise it will never beat you!

  33. Hi Carolyn, I too have a chronic incurable disease I have lived with every day for the past 30 years. I have Crohn’s disease, which can be quite dreadful and stress induced also. I admire your courage and fortitude in dealing with MS.
    Congrats on the Freshly Pressed!

  34. what bugs me are the people who say ‘you look well’……. to which I find myself replying ‘looks can be deceiving’…… they just don’t seem to get it that autoimmune is with you forever….. I have LUPUS, with associated other issues, but people think when you come out of a flare you are cured! arghhhhhh

    • I know what you mean, though my illness is mental not autoimmune. I think people just WANT to believe it can be cured, like right this moment, because it’s too hard to comprehend otherwise…

  35. Stigma, embarrassment, burden, trapped – all words that are oppressive and hurtful and they are a daily reality for all of those that live with disease and illness – seen and unseen. While those whose afflictions are seen receive an immediate response from those they intersect, sometimes those whose affliction is hidden beneath the surface develop paranoia that all they see know. It is these words that circle their mind and heighten their insecurity.

    Your sensitive and poignant article is a sentinel for others to be aware of the internal demons that torment many of us on a day to day basis. You place your own soul in our trust by your revelation and challenge each of us to protect others and in doing so we help you protect yourself.

    I have three sons – two born with handicaps; one a 1 pound premature infant who developed CP and another with a congenital heart condition that was operated on successfully at three months of age. I have watched both of them contend with the overt visibility of an affliction and the stigma that derives from it. Interestingly it was my third child with the heart condition that has shown me the depth of fear from a relatively unseen condition. It is he that was for a long time very concerned others would ‘find out’ why he had this long scar – something I would have sworn as a male child he would have thought he could exploit to gain acceptance. It was years before he would remove his shirt at a pool or the beach. I learned it is what is not seen and visible that people often worry the most about.

    Thank you for your exposure and risk! May we all be worthy of your sacrifice.

    Tom Loker

    http://www.loker.com

    http://tloker.wordpress.com

  36. There’s nothing like a long term illness to compel one to grow beyond the prejudices and fickleness that our narrow minded society incumbents upon us. With Diabetes Melitus myself, often people ask me ‘How long do you have that?’ or ‘How did you get that?’ As if any of it matters. In my experience, the most important thing to remeber about life, whether one has a long term illness or not, is; ‘We are all long term sufferers of ignorance and rudeness’ – Induptible Dave.

  37. I’m sorry to hear about your difficult situation, Carolyne. You put your feelings into words very well. Thank you for letting us know about how difficult your life really could be if you let it.

    The overwhelming majority of society does not know about how some of us simply do not have the same abilities and opportunities to live out our life as most people do. I believe that is just their ego. Like you mentioned, I try to keep my ego in check and not to attach it to other people’s labels. That is a great philosophy to practice.

    As a Traumatic Brain Injury survivor, I too live with a chronic illness. It is my opinion that we all suffer from a chronic illness called life. After being the passenger in a single car accident – the driver walked away – I have had to live as an entirely different person in many ways. My life as it was is gone. I feel that person is virtually dead now, but my body lives on. I too have seizures and spasms from my old right side paralysis. I have gotten over much of that, but it still exists and prevents me from working at my chosen profession. Stress is my big tremor trigger.

    People do not understand why I may walk away instead of enduring a stressful or difficult situation. My incident happened in 1983. I did work for several years after the incident, but I was still young enough to be able to do that. When my car accident happened, I was just twenty-four years old; still relative young. Growing older causes your physical and mental abilities to lessen normally. Add a severe injury like we each suffer from, and life becomes really hard to live. But like you, I try to keep a good attitude. Unfortunately for me, that doesn’t help my wallet.

    As you undoubtedly know, the whole problem is in our collective consciousness. There are no hard fast rules to tell us that people who do not conform to the rest of society should be separated from the herd and singled out. We just try just to survive, yet discrimination sets us apart from the rest of society.

    Thanks for enlightening us about your condition. I hope things are going well for you and everything works out in your life.

    Jim

  38. Teach that person to face their fear by educating her/him with the proper literature via internet or books along with a first- aid lesson followed up by a step by step mock demonstration in what to do in case of an emergency, whether it be a seizure, heart attack, fainting etc. Be proactive , you never know what may happen!
    Namaste!

  39. my aunt has MS and continues to live an amazing life. she’s strong-willed and humorous, which get her a long way. at this point, most people don’t notice her symptoms because her personality outshines them. thanks for sharing!

  40. I know where you are coming from and I think you nailed it perfectly. It was hard enough for me to accept my shortcomings since I never accepted when people told me I couldn’t do something. Even today there are people who know me pretty well but do not understand me and my “problem.” Either they pity me or they think that I’m self-pitying myself. I don’t think they see the stress all of this causes. There is still a person-the same person-in here and your post speaks so much to so many! Thanks and good luck.

  41. I understand the “fear” people have- I work with children, 2 of them have MS… the fear is ignorance. I love your attitude, and the first quote re: pain is absolutely inspirational… I will share that with people at work!

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  43. Lovely post. My cousin has MS … and I intentionally did not just write, “suffers from MS,” because she too is beautifully navigating the course.

    I wish you health and happiness. Thank you for sharing this, and congrats on being Freshly Pressed. Well deserved!
    :)

  44. Namaste dear one. You seem to have it figured out. I hope that you are putting these wonderful tips into use. It is a long and lonely road when you have an illness such as this where people just don’t know how to act. It is not the same physically, but much the same when someone is recovering from PTSD. As someone who is dealing with PTSD as a survivor of sexual assault I have seen these same types of behaviors in people that I know. Your tips here are wonderful rules to live by.

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  47. Your initial quote is not from an unknown source. It, too, is from Buddha.

    My mother is bi-polar. One of the many stresses of having a mentally ill family member is if/when they are not responsible enough to take medication, causing misery and chaos. Another source of stress is that doctors don’t seem to understand that mental illness affects every single member of the person’s family, and they, too, need help and guidance, not just their patient.

    A third source of stress is that mental illness *is* stigmatized so it’s not easy to find social supports.

  48. Thank you Carolyne. Great suggestions. ‘Walking away’ has been the difficult one for me — I’ve worked through a great deal of old fears of loneliness. I’ve given up waiting for certain friends to call to invite me on a less-strenuous hike, stop over. . . Other people show up unexpectedly who don’t define me by this illness, and I find these relationships so much deeper and true-hearted.

    So this is the third, including Edwin up above, very clear message I’ve received since yesterday to “Walk away if need be.” I’m with you!

    And congrats on being Pressed.

  49. I never knew people with MS felt stigmatized or biased against, much less many people with various chronic illnesses.

    Perhaps some of this is due to not having a chronic illness myself – though I do have a visible birth defect that does make me look different from most people.

    My step-mother has MS – had it for at least 15 years – and I’m unaware of her having felt any stigma or bias. My mother suffers from fibromyalgia, and though she does get a lot of people who discount her problems, I don’t think she feels stigmatized or biased against, especially as more people are becoming diagnosed with fibromyalgia.

    Frankly, unless I am feeling discriminated against – and I speculate the same goes for my mothers – I’m blissfully unaware of most biases or “stigmas”. And, when those instances might occur, it’s pretty easy to shrug them off. At most, I’m feel mildly annoyed that the person(s) – usually young adults, teens and children – were not taught how to be polite and respectful.

    Then again, in my mother and my own case, our faith sustains us and provides the worldview in which we filter our interactions with the world. Were neither my mother or I not Christians, we might certainly be thin-skinned and easily affected by supposed stigmas and biases. But, Christ is our strength, and we lean not on ourselves.

    • I am sorry to hear this about your family.
      Would you be willing to share your story about your step-mother on my blog? It is very problematic to find people who want to share stories about their stepparent! I only had one response :-)

    • Discounting her problems is the essential stigma and bias against fibromyalgia sufferers. Honestly what more do you want from a stigma than “you aren’t really hurting”? No offense, just saying…

  50. Great suggestions! Living with bipolar disorder has taught me a lot about stigma and how to deal with it. Sometimes I use humor to diffuse things. My post today attempts to do just that. It’s called “Everything I need to know I learned in a mental hospital.” It’s some pretty heavy satire, but learning to laugh has helped me enormously.
    Kathy

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