I’m so tired of people comparing and ranking different types of disabilities.
Particularly, I’m frustrated that people with psychiatric disabilities keep saying that it’s worse for them because they can’t talk about it, whereas people with physical disabilities can.
I get that there’s a lot of stigma against mental illness. I live that every day. There’s a reason I don’t tell anyone at work I have a mental illness: I’m afraid that if I’m ever well enough to get a job, that will get in the way of my being hired.
But I live the other side of the coin every day too. I have severe ulcerative colitis. Do you think it’s socially accepted for me to talk about how I was up all night shitting blood? I think it would probably be more acceptable to say I was hopelessly depressed.
Because of severe fatigue and weakness, I often have to use a cane if I’m going to be on my feet for more than 30 seconds. Do you think people don’t judge me for that? Strangers ask, “What’s wrong with you?” I get asked if I’m contagious. I get told I don’t look sick. I get told I’m too young to be that sick. I get told I should just stay at home if everyday things are so hard for me. A LOT of things aren’t accessible to me, from public transportation to jobs, because I can’t stand for very long, even with the cane. And when you start talking about accessibility, people roll their eyes and act like I’m being an entitled brat.
Not everyone, of course. Some people are lovely. But overall, people don’t care. They’re not willing to go a little out of their way to accommodate someone with a physical disability, either. So please, for the love of god, stop saying that people with physical disabilities don’t also face stigma and discrimination. Let’s stop playing the “Whose Life Sucks More?” game. It’s not productive, and it just leaves everyone feeling worse afterward.
Another Hope Entirely 
Hope, Excellent blog and you are so right on target. The old adage of if it doesn’t show, it couldn’t hurt just isn’t true. I have a slow emptying stomach which leads to a host of other problems and like you, I elect to keep the issue to myself. Who wants to go around talking about ‘their issues all the time.’ We’ve faced the stigma of mental illness for so many years with my husband, I’m beginning to wonder if the general public will ever own up to 1 out of 4 of them are also chronically mentally ill?
Brilliantly written, and you nailed it. Well done!
Good points. We all need to be more understanding and supportive of one another.
I do agree with you. I think for everyone it is different. I know for me even if I was able to say I have ulcarative colitis at least people would actually believe it’s true. Or I hope they would. Although, I understand people talking out of their butts about what goes on. What’s hard for me is that I have people either telling me they don’t think I have a mental illness or on the other end thinking there’s something really wrong with me. I feel like I am in a constant battle, not only with others but with myself because there is no test to PROVE that I am Bipolar. That my brain doesn’t work like everyone else’s and probably never has. Unlike many people, I don’t have childhood trauma or anything that would have MADE me this way, or led me to be this way. I am that one in who knows how many that has absolutely no reason to be mentally ill on paper. And it’s frustrating when I have to defend having an illness that I don’t want to begin with. So I completely understand people looking at you and asking stupid questions. i don’t think what I have is worse than what you have, or many other people for that matter. While my illness does effect my body at times, for the most part I am healthy and don’t live my life in daily physical pain and for that I am grateful. I wish that when we spoke we would wish the best for whatever issues a person has and stop seeing them as their illness or claim and just as someone that you wish didn’t have to deal with something so difficult to handle. Whether ir’s emotional, mental, physical, or spiritual. Be blessed!!
Sadly, people don’t always believe me about the UC. When I first got really sick, I was in a psych hospital, and the dept. of medicine doc did nothing but tell me to drink Gatorade. When I finally went to the ER of a medical hospital, the intern interrogated me about my abuse history and then accused me of causing my illness by overdosing on something, even though an overdose wouldn’t cause the lab values I was showing.
Since then I’ve had multiple docs and nurses accuse me of being a drug addict or of exaggerating my symptoms. I’ve even had a doctor ask, very hostilely, how I could possibly know if I was having a flare.
Other doctors routinely blow off my fatigue and weakness. They tell me it’s just depression or I need to exercise more, completely disregarding the fact that just standing up is often more than my body can handle.
So physical illness doesn’t exempt us from judgments and stigma.
Absolutely. I’m sorry if you thought I was implying differently. I am sorry that you have had that experience with doctors. I had some of that myself as I had gall bladder attacks for 4 years before it got so bad I was hospitalized for 4 days. Had a morphine drip and everything. I was a very sick lady. I hope that you are able to surround yourself with positive people who will help to build you up and hopefully find some ways that life can be a little easier. Many blessings to you!! 😉
No, I didn’t think you meant anything bad–I was just elaborating. Sometimes I just go on and on. 🙂
I’ve never had gallbladder issues, but I’ve heard they can be really painful. I hope they were able to resolve that finally.
Reblogged this on Motorcycles, Books & Fructose and commented:
Extremely well written. Hope, made a lot of good points in this post. All of which I agree with.
Or people with psychiatric diagnosis comparing which one’s are worse or who is more severe. That REALLY bugs me!!!
YES! In general, I just don’t understand why some people feel the need to rank suffering. Isn’t it enough to just acknowledge that people are suffering and do our best to ease that? Why the need to invalidate other people?
I think it happens mostly when people feel like their suffering isn’t valid/isn’t being validated. And I get that, I’ve been there, and it sucks. We all need other people to say, “I hear you. I believe that you’re in pain, I believe that it’s real, and I want to help if I can.” I know that invalidating someone else’s suffering doesn’t actually make you feel better.
I totally agree with you. As a blind person, I face accessibility issues every single day. Its a nightmare. Your right most people dont give a rats ass about us. I hate the people who play that game of my life is worse than yours, everyones life circumstances are different, and some people are dealt shitty circumstances and are trying to make the best of it. XX
Well put, Hope!
When I saw that “nobody” had “liked” one of my posts, I knew I had to check out your blog. And I’m so glad I did.
This is an important post. There really does seem to be a competition — who is more miserable today? When the truth is, we all need more compassion whatever we have.
I was also sorry to read of your colitis. I was diagnosed with colitis at about 15 (I’m 57 now). I had surgery to remove my colon in 1982 and in about 2004 my problems returned. It turned out that I had crohn’s, not colitis. C’est la vie. I’ve written about it quite a bit — which helps. So do the great drugs I take (Remicade is a godsend.)
I hope that you are in a position to get good doctors, that they find what works for you. And that you achieve remission so you can get on with your life.
Feel free to contact me if you want to talk about the scoop on poop. My contact info is on my blog (otherwise I’d get tons of spam).
I agree–compassion is what we need, not competition. I get so tired of it, of having to prove to people that I’m “sick enough,” whatever that even means.
Luckily I have a wonderful GI doc who I wish I could clone for every medical specialty. The only problem is that his office staff are extremely disorganized–my appointments get canceled and rescheduled with little notice, I show up for a scheduled appointment to find out my doc isn’t even in the office, and they often tell me I can’t get an appointment for 3-4 months. Luckily, my doctor knows this is an ongoing issue, so when something urgent comes up, I leave a message for him, and he fits me in for an urgent appointment. (I think I probably scared the office staff when they said they couldn’t schedule me for several months, and I started sobbing into the phone about shitting blood and passing out at work.)
My problem is mostly just that nothing puts me into remission. I’ve come fairly close with the combination of Entocort, Humira, and 6-MP, but it’s a constant balancing act because a high enough dose of 6-MP to keep my symptoms manageable also suppresses my bone marrow and makes me puke a lot.
I’ve mostly come to terms with the idea that I probably won’t ever go into remission, so it’s not a matter of getting on with my life…it’s more about adjusting to life with chronic illness and making it work for me the best I can.
You might consider surgery. I was terrified of it, absolutely terrified. But it changed my life. Or gave me back my life. I had an ileo-rectal pull-through. They took out my large intestine, pulled my small down to my rectum and dissected part of my intestine to form a poop pouch. It involved two operations. When I had mine done in 1982/3, it was very new. I was the 100th performed, the 7th by my doctor. It was then only done at Hopkins (where I had it done) and the Mayo Clinic. Subsequently it became more common and I believe it can be done laprascopically today. It isn’t done as often now because of the availability of drugs.
But you can’t have a diseased colon if you have no colon.
Keep my contact info in case you ever want to talk/email about it.
Really, it gave me back my life. I was very sick. Nothing worked for me either. (It turns out that I have Crohn’s, but I was originally diagnosed with colitis. They are quite similar when Crohn’s limits itself the the large intestine.)
I’ve written a bunch of posts on different aspects of it.
Good luck!
My doc says he doesn’t think I need surgery because my illness is mostly controlled with the meds. I’ve thought about getting a second opinion, but surgery just seems so dramatic. I’m still adjusting and trying to accept my illness–two years ago, I was healthy, and now I can barely function. I’m not sure I’m ready to come to terms with life sans colon yet.
From what I’ve read, it is not well controlled. Not if it affects your life that much. Get a second opinion. I don’t know where you’re located, but go to a big teaching hospital clinic. Talk to both a GI doc and a colorectal surgeon (I know a good one in Boston).
I was terrified of the surgery. Immobilized for years. But I got worse and worse and I had no choice if I wanted to have a real life.
Except for a short interim time between the two surgeries, I did not have a colostomy bag. That was very important to me. I was 24 and single. (I’m now 57 and married for 28 years).
After the surgery I got on with my life. I was able to travel, go to outdoor concerts, hike, etc. without fearing I would poop in my pants. I had a life.
But it is a big step, and I understand your hesitation. But do talk to another doctor and possibly a surgeon.
Not a minute goes by that I am not thankful I had the surgery.
I’d be very interested to hear your recommendations for docs in Boston. I live in western Mass, and there’s a doctor shortage out here. I can take the bus or train into Boston–it’s a long day, but doable.
I really like my gastroenterologist, but I suppose a second opinion couldn’t hurt. Did the surgery help with the non-bowel issues for you, too? I’m having SEVERE fatigue as well as joint pain so bad I can barely move a lot of the time, and I’d be more open to surgery if it would help with those issues too.
I didn’t have joint pain. It helped a lot with the fatigue — because really severe diarrhea is draining in many ways. So is loss of blood.
I just looked up the surgeon who did a procedure on me in 2008 and who had moved to Boston — to Tufts medical center (Dr. Bruce Orkin). But he has just moved to Chicago, so he’s of no help to you.
Your doctor should know which of the major medical centers in Boston is best at GI, and might be able to give you a recommendation. Don’t be shy about it. (1) it’s your body; and (2) this happens all the time with smart patients and (3) sometimes a case is more challenging and needs new, creative thinking. A good doctor knows that. An insecure one doesn’t.
Oh, I work in medical care — medical writing. I know more doctors than I can shake a stick at and they all agree. Second opinions are really important.
Mass General is listed as #3 in GI and GI surgery in US News. Below Mayo and Cleveland Clinics and ahead of my beloved Johns Hopkins.
That’s good to know! I’ll look into that.
Be a snob about your doctors as much as you possibly can. Yours doesn’t sound like an average case that can be handled by just anybody. You may need someone who has some more creative ideas (have you read about fecal transplants? Very useful in certain indications — not colitis (or Crohn’s) at present. Hard to get someone to do it. But they think that there is a strong correlation between bowel disease and lack of good bacteria in the gut. Poop transplants sound pretty gross if you ask me!)
I did some serious research into FMT, but since the FDA decided poop is a drug, now you can only get it for C. diff., which thank god I haven’t had so far. (They thought that was what I had when I first got sick, but that was not the case.) I would try it in a heartbeat if it were available. I mean, everything I’ve read says there are virtually no side effects, as opposed to all the drugs I’m taking now that can cause cancer and brain infections and scary stuff like that.
Apparently MGH has a whole Crohn’s and Colitis Center that looks, at least on the internet, very good. I’m gonna get in touch with them. I’m sure it’ll take a while to get an appointment with them, but it already takes 3 months to get an appointment with my doc in western Mass, so not much different. I really love my gastroenterologist, and he’s been really helpful…but I’m still sick all the time, just less acutely so. And I feel like he hasn’t taken the fatigue and joint pain seriously. I mean, I went from running several miles a day and doing martial arts for 8 hours a week two years ago…and now I have to use a cane to stand up because after about thirty seconds, my legs start shaking like the muscles are going to give out. I know some fatigue is to be expected with any chronic illness, but mine seems to go beyond what most IBD folks experience. But he just says my blood work looks fine and sends me on my way. It’s frustrating as hell.
I spent some time on the MGH site. There are some great doctors there. Looking at their publications, I would go with either Dr. Ananthakrishnan or Nguyen. Nguyen wrote a book chapter on management of IBD and those tend to be quite practical. The two have co-authored a lot of understandable articles — which is always a plus to me. If a doc can’t communicate, then there is no point going to him/her. Anan… is a man, Nguyen is a woman. Of course, who you get might be determined by who you can get in to see!
Yeah, doctors who can’t communicate are pretty awful. I had a really bad experience at 17 with a neurologist. I was alone and scared, and he walked into my little ER cubicle, told me, “You have an arteriovenous malformation in your left frontal lobe, and I’m sending you to a neurosurgeon,” and walked out. I thought I was going to die. I mean, I had this thing with a long scary name I’d never heard, and he was sending me to a neurosurgeon. Obviously, I didn’t die, and lucky for me, the neurosurgeon was great. But you wonder how these people get through med school without learning you have to actually talk to patients. I didn’t go to med school, but I’m a smart person who can understand what’s going on if you actually talk to me.
I won’t be able to get there for at least six weeks anyway. I’m working on a campaign, and I don’t have time to go traipsing out to Boston until after the election. But I’m assuming it’ll take longer than that to get an appointment, so it’s all good. I’m hopeful that they’ll be able to offer some new solutions that might improve my quality of life.
I hope so too. And you’re right — it’ll take a while to get an appointment.
Good luck with Coakley’s campaign!