Q&A on Physical Disabilities: multiple sclerosis, CFS, AIDS, etc

What is chronic illness?

Any ongoing illness one doesn’t heal from. People with chronic problems can face lots of pain and distress or have limits and circumstances brought on by the illness or disability.

There are different kinds of chronic illnesses; those which if managed well, don’t cause a lot of discomfort and distress, illnesses where there is little to relieve stress and pain, and others which are progressive; developing new disabilities or eventual death.

Diabetes is a good example of an illness which can be managed with little distress and discomfort. A person with diabetes certainly has ongoing symptoms and difficulties, but if cared for, the personal stress and discomfort can be greatly minimized.

In other chronic illnesses, however, such as someone with back problems (dislocated back, etc), the pain and physical limits can become stressful and debilitating. Using pain killers can have side-effects, sitting, walking, standing, lying, no matter what the stance, the pain can be ever-present.

And then there’s progressive chronic illnesses, for example, muscular dystrophy or multiple sclerosis. These illnesses create continued deterioration in a person’s health. At different phases in these illnesses, there are new emotions/situations to contend with which can cause tremendous amounts of distress, not to mention the varying levels of physical pain. Or in the case of illnesses like Alzheimer’s or AIDS, death is an known eventuality.

How does a physical disability affect one’s emotional and mental state?

Feeling angry/enrage, sad/depressed, afraid/terrified, frustrated, confused, helpless, inadequate, embarrassed, ashamed, odd, numb, are just some of the emotions someone with a disability or chronic illness can have. Long-term painful thoughts and emotions can lead to alienation, loss of friends, more symptoms, feeling alone, and so on. It’s important to have lots of support in many areas, and means of coping if you’ve just developed a disability, or are having a hard-time coping with a disability you’ve had for years.

These emotions vary greatly from person to person. But for most, the onset of a disability later in life creates dramatic changes in how to live and feel.

Studies done show people who are born with disabilities tend to be more well adjusted than people who’s disabilities came later in life. A person who goes blind at 20 years old deals with issues around the loss of never seeing what’s around them again, and the fear of, "Will I be okay? Can I still live without seeing?"

A man who’s done physical work his whole life, may experience a tremendous struggle. Finding he can no longer work or be independent can be especially debilitating for men in this society; many men have the false belief (society tells them) work equals their value.

How does it affect family, friends, colleagues?

Many of us who suddenly become disabled, or develop an illness which creates a disability, will need to lean on family and friends both physically and emotionally. And just when a family member thinks everything is "under control", more needs or emotions may arise. People at work may become frustrated as well, since you’re either not at work, or can’t do the same things prior to the disability.

Because so many disabilities and illnesses take place later in life, many times these people are in life-committed relationships. This creates a special set of conditions affecting the mate. How does a mate deal with this chronic disability or illness? It’s extremely hard; a problem the mate has little control over. In recent years we’ve developed support groups for people who are husbands or wives of people suffering from chronic or terminal illnesses. So many issues are involved, not just in coping with the issues of the person who’s ill, but also coping with what one’s commitment is, finances, etc. It’s an ongoing, lifetime struggle. Someone who’s developing Multiple Sclerosis, sees their abilities disappear, and can see their mate trying to accommodate. They may feel things becoming more burdensome. Its a real struggle for both people. It’s very important to get support from friends, family, or a counselor while working through issues as they develop. Sometimes even just a little help can go a long long way.

What are some common stages people go through when faced with a disability?

To some degree, it’s similar to any major loss. Grief, denial, anger, depression, trying to figure out how it can change and will affect them. If enough resolution develops, one can accept the circumstances and limitations; accepting what the universe will hold for them.

How common is it for a disabled person to become angry with people? Even the ones they care about?

Like any major struggle in a person’s life, sometimes anger is misdirected. Anger at oneself or at God is easily spilled onto people who are close to us. Everyone who’s disabled is not going to be an angry person, but at times, as in any stressful situation, human beings get angry and misdirect it. It’s important for people who help the disabled person not to tolerate disrespect from the disabled person, and to remember the anger is probably not about them. People who help disabled or chronically ill people must take care of themselves. It’s not their job to take abuse from somebody because they’re in pain or emotionally distressed (even if it’s your spouse).

There are so many different kinds of illnesses and disabilities, and of all ages. Are there any common threads?

People who are disabled are regularly discriminated against. Many people who have a disability or develop an illness will experience anger, frustration, and depression, from being part of a group being discriminated against. Things can be very hard, whether we’re talking about wheelchair entrances, promotions at work, strange looks, prejudice, or ridicule.

Thanks to the Americans With Disabilities Act, for the last 30 years, things have been changing to help disabled people engage in society. Things like wheelchair ramps into buildings, elevators, wider entrances, and so on, but these things still aren’t universal. There are just many barriers for disabled people. This is true whether you’re age 70, age 10, blind, or have AIDS.

What could a counselor do to help?; after all, a chronic illness/disability isn’t going away.

Counselors can work with friends, family, and the person who’s going through it. Coping and healing involves refocusing their lives, understanding abilities and limitations, moving through stages of loss, and coming out the other side finding new ways to feel good about themselves and their life. There are many strategies counselors use to help people heal and move forward.

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