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When the Judgement of Others Hurts

By Gaye Sandler

When I was young, I had severe chronic fatigue syndrome that went undiagnosed for years. Like so many of you, it also affected my relationships with family and friends. †I struggled on a daily basis with people who doubted my illness. It was normal to hear comments like ďYouíre always sickĒ or ďwhy donít you do something about it.Ē And, sadly, for years, I felt that I had no choice but to pretend that I felt well when I didn't. Of course, there were times when I couldn't pretend.† Yet, it hurt when my friends seemed to blame me for the illness. Even today, I get so angry when I see victims who are told that itís their fault or that itís all in their heads. Thatís not true and we, as patients, have to fight for our rights, for our friendships and for our self-esteem.

As Iíve gotten older, Iíve become much better at caring for myself. †I respect that Iím a woman with an illness. I believe that Iím a good friend. I am an important part of my family. Still, every now and then, I find myself confronted with the judgement of others. Several years ago, a well-known rheumatologist gave me the Minnesota Multiphasic Personality Inventory (MMPI), which is used to assess medical patients and symptoms of social and personal disorders. I felt that the doctor was looking for depression and maladjustment in me, and I was offended by the questions. I pride myself on handling my IC (and overlapping conditions) well. I told the doctor that when I was young and unwell, and no one could find anything wrong with me, I often felt depressed. But, when I was finally diagnosed with real conditions and began proper treatment, the depression lifted.

Just a couple of months ago, I took the Myers-Briggs test because I thought it would be a fun thing to do. It can help determine what career you are best suited for and is also used to understand personal relationships. But, when I started looking at the questions I became angry. I felt very defensive, because I could not answer the test honestly. I called my friend Diane (who uses it frequently in her work) and told her how frustrated I felt because I would be labeled as something I am not. She didn't understand, so I gave her an example, a question that asked if I was the type of person who has to plan her outings or do I just go out and see what the day brings. I used to be the type of person who could be spontaneous, but now, with IC, I have to plan just about everything. Then, I actually began to cry. I told her that I took pride in handling my life with IC well, and that I couldn't look at the test because it brought up feelings that I have put away. I can't even remember what it felt like to be "me" before I got IC.

Diane said that, according to the Myers-Briggs theory, people stay the same type unless they have a major "life-changing" event. For example, after a woman has a baby she might test differently. The new responsibilities that come with her baby may mean that she must plan things more than she did before, when she had less responsibilities. But, if she was always one to carefully plan, she may not show that much change when tested. This made sense. Diane suggested that I just answer the questions I wanted to. I did and the results showed that I was mostly the type of person I was before IC, the "old me." However, I believe that if I had answered all of the questions, I would have scored differently. I would be who I am with IC.

--- Jennifer ---

Recently, a young IC patient, Jennifer, and her family came to our home to talk. Jennifer is a bright girl with very supportive parents. For this, she is lucky, but she is having a very difficult time keeping up with the expectations of a 23 year old.

Although her friends can't tell her that her problems are in her head, they still don't understand and are unwilling to accept her the way she is now with IC. They are always telling her to go and do something, because it will make her feel better. They don't visit her home and they make Jennifer the designated driver when she's included in "the party," because she can't drink like they can. Even some of Jennifer's friends' parents don't understand that she has an illness. Neither does her boss. Jennifer says she apologizes all of the time. She says that she feels guilty about being a burden to her parents. And, she feels old, and scared to be intimate with a guy. However, she finds her male friends more supportive than her female friends, who have too much drama in their lives. Jennifer knows what real life drama is.

In my opinion, Jennifer is handling things well, all things considered. She tells me she has become more outspoken and honest. She gives articles on IC to her friends so they will understand. This courage usually comes with age, so Jennifer is ahead of the game. She has close male friends, and in my opinion she will find a very good husband if she chooses to marry. Jennifer is mature enough to realize that most young people are selfish, and that when you have an illness like IC, you don't have time to deal with their pettiness. And, Jennifer has the guts to tell her friends that they have hurt her feelings.

--- Christy ---

Christy is a 24 year old IC patient with two small children and (thank goodness) a supportive husband. However, she feels like her emotions are "paper thin," and she feels like a physical wreck. Christy has just been diagnosed after three years of pain and is just starting medications. She says that people think she's crazy. They even go so far as to tell her to "grow up" when she can't manage. Christy worries about her neighbors. She used to be a patient mother and now she finds herself sometimes yelling at her children when her pain level is out of control.

Christy experiences pain with sexual intercourse, and before she was diagnosed and couldn't justify her experience, her husband felt like she didn't want him.

There can be lot of rejection with IC, on both sides, the patient's side and the partner's, friend's or family's side. When we are asked to do something that would not be hard for others but is hard for us, the asking person may read into the situation and not understand us at all.

We all obviously deal with our IC differently. We are all different types of people who share a similar calamity. I have a good IC friend, about my age, who does not let very many people know that she has IC. I can't imagine how she copes, especially because she has to entertain a lot for her husband's business. She is afraid to list her conditions on medical forms because her insurance might be dropped. She is afraid of how others, including insurance companies, see her.

Of course, there are many patients who are barely surviving, such as single mothers and patients who do not have supportive partners, families or bosses. Unfortunately, some of these patients must hide or think they must hide their IC in order to survive. We have had e-mails from patients who tell us that they are exhausted from overextending themselves. They do this because they don't want people to see them as lazy, selfish or neurotic.

Being judged is painful particularly when the judgment is incorrect. This is why, when possible, we need to be open about our illness. We can't afford to always meet other people's needs. We need to fight for our needs and look IC square in the eyes. Dr. Andrew Weil talks about the "fighting approach" or attitude about illness. Dr. Weil says that when people surrender and accept their illness the healing (and dealing) process begins. I don't think he is saying to accept the pain, just to accept the fact that we have an illness so we can deal and heal as much as possible. It certainly makes it easier for others to accept our IC when we accept it and deal with it. Others can see how very strong we really are, that is, the others that count!

About The Authors:
Gaye is an author and IC patient & support group leader who has been involved in IC work for years. In 1990 she published "Stretch Into a Better Shape" and produced a stretching and exercise video for IC patients in 1993. She is a specialist in Aston-Patterning movement and muscle re-education.

Andrew has over ten years of clinical and health care management position. He is currently the Administrator of Maison Hospitaliere, located in New Orleans. Andrew holds a Ph.D. in Special Education, a M.A. of Health Adminstration, M.A. of Clinical Psychology.

They welcome your comments and feedback on their articles at: The Sandlers

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