When Friends Dismiss Your Autoimmune Disease

I have decided the entry of the word psychosomatic into common parlance is a real curse for those with autoimmune disease.  Having heard the word so many times, it's hard for me not to get really angry with people.  I try to better explain Sjogren's to them, but it really gets me nowhere most of the time.

I need a quick and witty response prepared for the next time someone asks if my symptoms are psychosomatic so I can make them feel as bad for asking, as I do for hearing it.  Would I be on medicines that lower my immunity for a psychosomatic condition?  Unfortunately, I feel like I have to prove how sick I have been when someone asks me this question.

My most recent encounter was particularly hurtful because it was a friend whom I thought was understanding about my health.  I wasn't feeling well, but really wanted to see her nonetheless; and it was a mistake.  It always is.  I have noticed when I don't feel well it is much better to cancel plans, but sometimes I still push myself.  Even with many of my friends, I have found that I have to be "on" to deal with them and feeling sick and fatigued makes it harder to do that.

As I wrote about in a post on the complexities of Social Life and Autoimmune Disease, everyone wants to hear that their friend is doing better.  When someone like many of those with autoimmune diseases, doesn't get "obviously" sick and then feels better or worse without a visible physical manifestation or a clear end point to their condition, it goes against what we expect.  But that is still no excuse for anyone to minimize these very serious illnesses.

I am sad that this conversation happened because I am not sure that I will be able to move past it.  Because asking me if my symptoms are psychosomatic is probably one of the worst things you can say to me.  And just because you took college psychology or were in therapy for a year does not mean you know anything about my medical condition.

It still shocks me how few people know about autoimmune diseases given that estimates are that 50 million Americans are affected by them.  It is clear that those of us with these diseases have to become the educators.  It is hard being sick and then on top of that feeling like you have to prove it to others.  Maybe my response next time will be that I wish my condition were psychosomatic, but unfortunately it is a serious illness that has already attacked my glands, nerves, and lungs just to name a few.

Have you encountered these tough and uncomfortable situations and how did you handle them?
Do you have any particularly good responses to those who doubt your illness?

Who Would Have Thought: Parasites as a Treatment for Autoimmune Disease

Human whipworm eggs. Photo Kimberly Evanson, UCSF.

My first reaction to reading about this was a bit squeamish--they are going to treat people with autoimmune disease using the eggs of pig whipworms, but it is actually pretty interesting stuff.

The research is based upon the hygiene hypothesis which says that an increasing number of people in the Western world like the USA, Canada, and Britain are developing autoimmune disease, asthma, and allergies because we have become too clean.  These kinds of diseases are rarely seen in poorer or developing countries whose populations are still exposed to multiple parasites.  The theory goes that humans adapted to living with these parasites called helminthes over millions of years and that our immune systems came to depend on them.  Now that we no longer are exposed to parasites and other infectious agents with the development of indoor plumbing and modern medicine, our immune system can go haywire and into overdrive attacking things like cat dander in the case of allergies and our own tissue in the case of autoimmune disease.  According to Duke immunologist William Parker Ph.D., estimates are that about “4 in 10 Americans suffer from allergies and nearly 1 in 10 will develop an autoimmune disorder.”  Those are big numbers.

Small studies so far have shown promise with Crohn’s disease, ulcerative colitis, and multiple sclerosis. Participants take a tablespoon of saline with 2500 eggs once every two weeks.  While it doesn’t sound particularly appealing, the solution is tasteless and the pig whipworm eggs (Trichuris ova) cause the necessary immune response without any lasting infection.  The parasites die over a couple of weeks and are naturally discarded from the body.   In the case of multiple sclerosis for example, 4 out of the 5 patients participating in a small trial had a reduction in brain lesions when taking the egg solution and when they stopped taking it the number of brain lesions increased.  And in a larger trial with 29 people with Crohn’s disease, 70 percent of them went into remission after 6 months of treatment and 80 percent of them had a positive response.   Larger studies are in the works and some scientists have been working with hookworm as another parasite that might have similar outcomes.

For those of us with autoimmune disease, it sounds like the parasites might give the immune system something else to attack besides the body’s own cells and tissues.  One benefit to this kind of treatment might be that it is not a classic immunosuppressant that weakens the immune system and can also make people more prone to infections.   Who knows maybe there’s a chance in the not so distant future, some of us will be taking a cocktail of parasite eggs every couple of weeks to keep our immune systems in check.  If so, I would have to try not to think about what I am drinking. 

For more reading check out these links to my sources:

Scientific American Guest Blog, The Worms Within

Scientific American Guest Blog, Eating off the Floor: How Clean Living is Bad for You

Seeking Alpha, Should Biotech Investors Start Paying Attention To Parasitic Pig Worms And Autoimmune Diseases?

The Wall Street Journal, Parasitic Worms May Offer Hope on MS
Effect of Hookworm Infection on Wheat Challenge in Celiac Disease - A Randomized Double-Blinded Placebo Controlled Trial

Social Life and Autoimmune Disease

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Having autoimmune disease can be difficult to navigate in terms of relationships with friends and family.  People see illness in black and white terms. You have cancer or you are in remission.  You have the flu today, but you are expected to be better in two weeks and return to normal activity. When I first started to experience the cascade of symptoms which would lead to a diagnosis of autoimmune disease, I still tried to participate in all the standard social activities with family and friends.  I wanted everything to be OK – I wanted to be OK.  I felt ashamed that I was not well so I glossed over what was happening to me.  I didn’t have a diagnosis yet so it was hard to explain to other people. How can you justify your illness when no one knows what is actually wrong with you?

When my health declined rapidly, I had no choice but to tell everyone that I was sick.  I couldn’t work, go to school, or participate in family and social events all together.  There was no more pretending that I was OK.  My husband went to mandatory social occasions without me and served as my impromptu spokesman explaining why I could not attend and how things stood with my health and my eventual autoimmune diagnosis.  He lovingly protected me from the outside world when I was too sick to be able to participate in it. Things continued on like this for almost two years with me at home ill and in pain until I found a doctor who diagnosed and started to treat me.

With my health thankfully improving, I am presented with the new challenge of how to negotiate beginning to socialize again?

When I make plans with people, I always make the caveat that I might have to cancel if I am not feeling well. Even with an explanation about autoimmune disease and how symptoms can fluctuate daily, weekly, or monthly, the truth is that people can get annoyed when I do have to cancel.  But that is a risk I have to take or I would never be able to socialize.

On the other hand I have found that when I have recently been up to seeing friends or previous work contacts, people keep saying over and over again how good I look or how much better I look.  They haven’t seen me in a long time and I think they expect me to look horrible or they just don’t know what to expect, what to say, and they are uncomfortable.  It can be a difficult to hear because it feels like my illness has been negated -- like it is not tangible or real.  I have gotten used to hearing this line and sometimes I want to delve into an explanation about invisible illness and why you can’t see autoimmune disease, but usually I control myself.

But here comes in the next challenge -- expectations.  Once I have been up to and had a good evening socializing with friends, it seems that I am expected to be able to participate again in whatever event comes next.  People begin to see me as “better”.  In a way I should take it as a complement, my friends want to spend time with me and to see me more.  There could be worse things.  To me, it feels like pressure to do things that I might not be well enough to do.  Even with my health on a better trajectory at the moment, I still have to be very careful and there are real limits to how much I can do without overtaxing myself.

It is certainly a catch-22 in my mind -- make plans and risk having to cancel sometimes at the last minute or showing up, doing well, and having people think you are better and can do just about anything.  Even for my friends who are very supportive, it is clearly confusing how I can look good one day and then they might hear how badly I am doing the next.  

These are good challenges to have now that my health is more stable, but that does not make them any less  tricky and sticky to navigate.  What are your strategies for managing others expectations and negotiating your social life?

Ear Progress: My Story of Sjogren's and Ear Pain Continued

I think writing the most recent blog post about the possible ear manifestations of Sjogren’s might have been a good omen.  As I had mentioned, I had been unable to find an ENT physician with interest in really investigating my symptoms and knowledge of autoimmune disease.  The usual story would be that I would go to the ENT, he would look briefly in my ears and tell me everything looked fine. They would say that my ear symptoms where all related to the cranial neuropathies I have due to Sjogren’s and refer me back to my rheumatologist and neurologist.

For the last two years during these appointments, I have tried to explain that it at least felt like there were two different problems going on and two different sets of symptoms; the neurological aspects of autoimmune disease and something else that was causing what felt like an ear infection and ear pressure.  But doctors, as I have so often experienced, do not always spend the time to figure out if what the patient is saying is actually accurate nor to really investigate what might be causing a patient’s symptoms.   To make it more complicated--and more frustrating--my allergist and my internist on several occasions would look in my ears, find them red and inflamed, diagnose me with an ear infection, and put me on a course of antibiotics. This might help for a few weeks, but then the symptoms would return.

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The pattern repeated itself last week but my internist did not want to put me back on antibiotics without getting a second look from an ENT. While I was skeptical that this would be nothing but another fruitless trip to yet another new ENT’s office, I agreed to give it one more try.  I went to the new ENT’s office and was first seen by the resident who looked in my ears with an otoscope and said everything looked fine. Another wasted trip to the doctor I thought, at least I am no longer surprised by them. 

Then I met the ENT doctor. He was pleasant and very interested in my medical history.  When he looked in my ears with the otoscope, he said “I think I know what is going on here.” He then used a nasal endoscopy to look at my sinuses, throat, and ears and see if his hunch was right. At this point, I did not know what his hunch was, but I was glad to hear he had one. The doctor explained that I had eustachian tube dysfunction, which is suspected to be one of the primary causes of ear pain and pressure in Sjogren’s patients, as I wrote about here.  He also diagnosed me with chronic sinusitis.  Because the conditions are chronic and not acute, antibiotics would not provide a long term solution.  And so the doctor came up with the following plan to get started and see if he could treat these two related issues.  

1) He gave me a prescription for two new nose sprays: a steroid and an antihistamine.  I was already using a steroid nose spray, but he felt this one would be more effective.

2)  I would need a CT scan of my sinuses to get a better look at them.  (I was not crazy about needing another scan, but it turns out they had never looked at my sinuses and given my ear problems and pain level I’ll do it.)

3) Additional blood tests for allergies to see if the chronic sinusitis might be partially allergy mediated.

One of the most notable differences between this appointment and others I have had was the interaction and mutual dialogue between physician and patient.  My new ENT appreciated that I was a knowledgeable, well informed patient and said he learned a lot from my complex medical history.  While I don’t want to be too optimistic, I am really hoping this will be the beginning of some progress on the treatment of my now officially diagnosed eustachian tube dysfunction and chronic sinusitis.