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Maintaining relationships while managing chronic illness and pain

by Carol Sveilich, MA, author of JUST FINE: Unmasking Concealed Chronic Illness and Pain

carol sveilichThe old adage is true: There is nothing permanent except change. That saying applies to the inevitable shifts in our relationships with others.

One of the things that seems desperately unfair to those of us who live with a chronic illness and ongoing symptoms is the impact it can have on friendships or romantic relationships. Many people have difficulty not only maintaining established friendships, but making new friends because their illness keeps them from being continually active and socially involved.

Since the symptoms are for the most part invisible, there is often fear of skepticism and distrust. Many people don't tell new acquaintances (or even old friends) about their illness. Others feel they don't have the stamina to keep up with new activities and relationships, so they step back from potential friendships and dating partners. As a result, they spend more time alone and fall into a state of isolation.

The dating game

Every one of us is a flawed being. That's what makes us human. For some, our flaws manifest in the psychological arena. We may have panic attacks or be scared of heights. We may be painfully shy, distrustful, or suffer from bouts of depression. For others, it is physical. We may have an illness or condition that we feel sets us apart from the rest of the world and leaves us feeling different than the masses.

happy coupleThe reality is, most people feel they have one thing or many things to hide from the world. This notion comes into play in the area of relationships and romance. We try to present an ideal being to our mate for as long as possible. This is not always the best route to take, which doesn't mean that you should spring your illness on a new dating partner as you swing open the front door on a first date.

Sometimes trying to be as upfront as much and as quickly as possible is a good idea. However, in most cases it is probably best not to talk about having a debilitating disease in the first couple of dates or to include every detail of your distress until you know you have strong feelings for this person and want to continue the relationship.

If you get to the point where you think your may want to spend a significant amount of time with a new and special person in your life, let them know you have something to discuss with them. Try to share your story with confidence and matter-of-fact conversation, not pessimism and shame.

Talk to the person you care about in a place where you feel safe and are not going to be interrupted. Let them know you are nervous about talking to them about this issue so they are not flippant in their response, then take a chance and tell them what you are ready to disclose. It can be a wonderful talk because many people are surprisingly considerate. They may even share a secret or two about themselves with you!

You may feel that the person you are dating will "freak out" when they are told about your health challenges. The most important component before disclosure is to be comfortable with your own situation and reality. What may be required is time, self-examination, real patience or perhaps even some counseling sessions to get to a point of comfort and acceptance, especially if this is a new illness or condition. Being comfortable in your own skin, no matter what it is you consider to be a flaw, is an extraordinarily worthy goal.

The kindness of strangers

Some people feel their parents, siblings, coworkers or family members—even good friends—don't "get it" or cannot accept their illness or comprehend the symptoms of their disorder. One way to cope is to make friends with others who truly understand the challenges you are dealing with on a day-to-day basis.

People in pain and discomfort often seek out others who are suffering with similar symptoms in order to validate their own. Validation and support can be found in support groups or simply by connecting with one or two other individuals who live with chronic symptoms. Although the person may have a very different illness or condition, such an individual has the ability to be empathetic, encouraging, and a great source of support.

support groupIf a support group is not available in your area, there are online support groups that focus on individuals who live with your particular illness or symptoms. Companionship, camaraderie, strength and comfort can often be found in such groups of like-minded and caring people.

A support group is a living entity of camaraderie that never wavers. Most groups offer their members a phone or contact list to utilize in between meetings if you are having a particularly difficult day, have a question about how to cope, or simply want a laugh or a little companionship.

It's important to remember that each support group has a personality of its own. If you find a group is too focused on complaints and not enough on coping techniques and information, find another group. Not all support groups are created equal!

When you look perfectly healthy but cannot participate in activities such as trips, movies, or taking a short walk with friends, explaining why is sometimes difficult and tiring. People with chronic illness grow weary of explaining why they cannot do this or that.  Some people feel that others expect too much from them and that they are letting them down in some way if they can't keep up.

I facilitated a large support group for nine years. One person in the group shared that she had tried for years to keep up with the crowd by acting like she was "okay" even though she was experiencing debilitating fatigue, pain and side effects from medication. She finally learned, however, that blending in was not as important as staying healthy and taking care of herself. She learned through experience to "come clean" and let people know when certain obstacles were challenging for her.

Alternative avenues to support

What if you are unable to attend a support group in your area because of your frequent symptoms? What if there is not an appropriate group in your community?

just fine: unmasking concealed chronic illness and pain Several years ago I interviewed over 150 people for a book on coping with various chronic disorders. The book, entitled JUST FINE: Unmasking Concealed Chronic Illness and Pain, is often referred to as "a support group in a book."

It remains a viable option for those who cannot attend a local group. Each of the participants interviewed lived with an ongoing illness or a difficult-to-manage condition. All had experiences as well as valuable coping techniques to share. They candidly discussed their own special challenges.

Many of the people I interviewed were single or not in a close, ongoing relationship, which made it especially difficult for them when they were going through a rough patch. Most of those I spoke to had learned some useful methods or philosophies to help them through their darkest days. They share their insights and experiences in JUST FINE.

As strange as it may seem, some individuals feel their friendship circle actually expands after a diagnosis. Lee was one of the women who regularly attended my support group. She was unable to continue her full-time career as a graphic designer because of her illness. Lee shared with the group that she probably had more friends now because she has more time for friends. She went on by saying that she would not have met, befriended, and grown close to all of the special people she had met in her support group and outside of a work environment had she not developed this disease in the first place.

The creaky door of disclosure

If you decide to tell others about your illness, whom do you tell? Do you keep it hidden from the scrutinizing eyes of co-workers, supervisors, friends, and family? Who can you trust with this profound secret? Will your health worsen if you tell others, or might it improve, absent a disguise of boundless energy and good health? Will you feel like a failure in the eyes of others? Will they reject you? Will they doubt you? After all, you look perfectly healthy and just fine to them.

If you do decide to tell, how much do you reveal? Should you remove the mask of illusion, or should it remain securely fastened? Deciding whether or not to disclose your diagnosis or continue to disguise your limitations is very difficult.

There is little doubt that opening up to potential partners about your illness can be stressful and risky. Many people who live with a concealed chronic illness or condition often have to make a choice about if, when, and to whom to disclose their condition. And they have to repeatedly make this difficult choice in each new relationship.

chatty girlsIn a sense, this is akin to "coming out of the closet" and can be challenging for several reasons. Sometimes the difficulty lies in your own struggle to acceptance your illness. You may find it difficult to accept the limitations posed by the illness. To see yourself as someone who needs help, extra care, or stands out as different from the crowd can be experienced across a continuum from uncomfortable to intolerable.

It's important to realize that you may be projecting your own internalized biases and stereotypical beliefs about what being a sick person means. The reality is, it may not occur to others that your condition or symptoms are a weakness or atypical. Just about every person is carrying about something they consider to be a burden or a great secret.

Disclosing an easily concealed illness or condition is quite different from revealing one that is, or will become, more obvious. After all, no one ever has to know about an easily concealed condition, do they? They cannot see it; therefore, it does not have to be revealed.

A visible disability does not permit a choice about who to tell, how much to tell, or when to tell. When the illness is visible, information becomes public, rather than private knowledge. Surprisingly, some people with a concealed illness or condition said they would opt for a visible condition over their concealed one. Why? So their limitations would be taken more seriously.

Marie is a registered nurse. She lives with lupus. "Most people in our society seem to feel more comfortable with visible evidence of illness or disability. It is harder for them to envision what they cannot readily see. I believe it may involve a trust component to accept what they are hearing, rather than what they are seeing. A visible illness is easier to accept because the visible evidence is harder to doubt."

The dreaded question: "How Are You Today?"

"How are you doing?" or "How are things going?" are two of the most difficult questions to respond to if you look healthy but are suffering with an array of concealed symptoms. These are simple questions that you likely once answered very easily, without even thinking about them.

However, once you have lived with a chronic illness or chronic pain, finding the correct response is complicated and confusing. Do you really feel fine or do you simply say that to avoid a delicate moment between you and the person asking about your well-being?

how are you today?Revealing an illness to someone may change or strain that relationship. You may risk feeling less in their eyes, or worse, you may be doubted and scrutinized. When you live with concealed chronic illness or pain, "How are you?" becomes one of the most complicated questions you can be asked.

For most people, revealing an illness means facing possible rejection. "I disclose pretty early," reports one woman with fibromyalgia. "One of the first questions I am usually asked is, 'What do you do for a living?' I have to reply, 'Well, I am on disability'...and there we go." Another woman reported that she lets the people in her life know that she may need to cancel plans at the last minute. "Informing them seems to lessen some of the stress."

If one appears healthy, why would anyone believe they are not? The dilemma of disclosing often turns into the issue of control, or lack of control.

Avoiding disclosure can mean maintaining distance, controlling the flow of information, and therefore preserving one's control over the entire situation. Since power and control are the very elements that diminish or are challenged when one is ill, disclosing that you are ill can further complicate the illusion of control and power.

A concealed illness or condition can cause loss of endurance and function that only a discerning eye can detect. As a result of this, family, friends, and co-workers may discount the person's illness or fail to comprehend how it can possibly affect them. After all, it doesn’t seem to affect them.

Part of the success of disclosing one's illness or condition to others has to do with how comfortable you are with what is happening to your body. The more comfortable you become with your symptoms or illness, the more comfortable others will become. Strangely, that is often how it works. If it is no big deal to you, it won't be a big deal to others.

Disclosure in the workplace

How do you go about revealing your chronic physical condition to your supervisor without risking the security of your job or your position in the company? You might want to consider going into your supervisor's office and saying, "You may or may not be aware that I have some physical problems. I'll make sure that they don't become your problems. Just allow me to do my job." That's what a manager wants to hear—that you might have a health issue but you are a pro-active, conscientious worker despite your challenges.

co-workers chatWhat if, on the other hand, you choose to keep your condition secret, but you have to miss work here and there because of the symptoms? When there are frequent absences, management tends to think that the person is just not committed to the job.

What if you suffer from ulcerative colitis or another digestive disorder? Under those circumstances, you might consider going to your supervisor and saying something along the lines of, "I have a condition which results in unpredictable GI difficulties. It is usually only troublesome for a day or two, so know that if I am not here it is not because I'm out playing at Disneyland. It is because I’m having a flare-up and that it will pass."

If possible, express understanding of your supervisor's or co-worker's position and then do some problem-solving. One can still do worthwhile productive work in an appropriate capacity even if they are not feeling up to par.

If you have to miss work, assure your cohorts that you can and will make up the time. You may be able to prepare certain reports and correspondence from a home computer or work a flexible schedule that allows for rest periods. Interestingly enough, once everything is appropriately discussed and addressed, people who live with chronic illness are often more productive than average workers. This is another important fact to help assure coworkers and supervisors and put their minds at rest.

Developing a plan for disclosure is a valuable project. This helps you determine how and what information will be revealed. The decision to disclose or not disclose is a very personal decision. Either way involves some risk. Will you lose your boss' respect if you tell him or her about the status of your health?

The other side of the coin is that you may be granted more reasonable hours and assistance with your workload. Will you be able to take more breaks, or will you lose out on promotions or special projects? Disclosure can be a double-edged sword; there are arguments that can easily be made for revealing, or not revealing, a disability.

Do not define yourself as your illness. This is essential. "I am not my disease and I do not describe myself by this disease," reports one person with Crohn's disease. "When I do impart the news of my illness to others, I usually refer to it as the-disease-with-the-stupid-name."

When people with the illness look upon their illness as something they have, rather than something they are, it can help lighten the dark cloud of disclosure. Another person explained: "I have depression and chronic fatigue syndrome, but it is simply something I live with and have to be aware of. It does not define the human being that I am at my core. It is simply a chemical imbalance and an illness that I must contend with."

Another individual with a concealed illness described the situation by saying, "I will forever have this disease, but as long as I can help it with an overdose of humor and good friends, it will not have me."

carol sveilichAbout the author

Carol Sveilich, MA, is a counselor, author and group facilitator. She lives with fibromyalgia and Crohn's disease. Sveilich's book, JUST FINE: Unmasking Concealed Chronic Illness and Pain, has been called "a support group in a book" by readers and professionals. For FREE COPING TIPS, visit the book web site.

 

 

 

Posted: 12/29/2007 in Relationships  |  Also posted in: Coping

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