For the past few years, I have been writing articles on disability issues for various newsletters and magazines. One editor mentioned that it had become apparent from discussion in his MS support group, and from discussions with people with various disabilities, that the issue of anxiety related to having a physical disability was a topic that needed to be addressed. I was immediately interested in writing this article because as a visually impaired person who also suffers from an anxiety disorder I had, myself, spent a lot of time talking to others about the relation between my physical disability and my anxiety and panic attacks. Bu it seemed to me that the best way to explore this issue would be not through an article but in a workshop where people could share their experiences and help each other.

A few years ago, I facilitated a workshop in Guelph, Ontario, hosted by the Guelph Services for the Physically Disabled on Learning to recognize and cope with anxiety related to physical disability. About 20 people participated, some with MS, others with various disabilities. The goal of the workshop was to help participants learn to recognize the symptoms of anxiety, express their feelings honestly, learn what triggers their anxiety and how to lessen it. We talked about the symptoms of anxiety and discussed how often we mask the expression of anxiety. Very few of us are brave enough to say forthrightly: "I am afraid because…"; most of us, without realizing it, cover our anxiety and instead say things like: "I don't feel like doing this," or "I'm not in the mood." It is actually a release from anxiety to be able to honestly state that one is afraid. You use a great deal of energy covering up.

We examined how anxiety can also be expressed non-verbally, i.e. by breathing quickly and shallowly, or by tensing our bodies. These non-verbal messages can sometimes worsen the symptoms of our disability or counteract the effects of physiotherapy, so it is quite important to become aware of what our body is telling us.

Talk then turned to the matter of triggers. There are quite specific things which can trigger our anxiety, often related to a particular disability. These include accessibility issues, worries about employment, or how we appear to others. There are also more general triggers, such as dealing with the unpredictable course of a disease or finding a competent yet sympathetic doctor, or relationship issues. What all these triggers have in common, we discovered, was that they were all related to a sense of loss of control, over our bodies and over the course of our lives. This was the one trigger which seemed to underlay most others and which was common to anyone with any kind of disability.

Our feelings of anxiety are related to our thought processes. The way we tend to look at and interpret the world around us influences how we think. We can get into a never ending circle unless we understand our tendencies to think in a particular way which may in fact be a distortion. For example, how many of us get nervous because we have been thinking about a particular event in a negative way? The group discussed various cognitive distortions, such as negative thinking or catastrophizing or getting caught up in the shoulds. So often we raise our anxiety level by believing that we should be able to do this or that, or that we should be able to manage like others. Everyone has their own favorite distortions but you can learn to recognize them and change your thought patterns to more positive ones, ones that support you instead of sending messages that you are just not good enough the way you are.

The workshop ended with a lot of suggestions about how we can lessen our anxiety. Finding a doctor who really knows about your disability but who will also take the time to talk with you topped the list. Other suggestions ranged from relaxation exercises, to pet therapy, to starting self-help support groups. The sense of sharing that grew through the evening, the willingness of these people, mostly strangers, to talk about these issues indicates to me how great the need is to initiate a dialogue about anxiety related to physical disability.

Common symptoms of anxiety: rapid heartbeat; shortness of breath or quick, shallow breathing; sweating; feelings of unsteadiness, i.e. 'rubbery legs'; trembling; choking or smothering sensations; feelings of unreality or being disconnected from your surroundings; feeling confused or overwhelmed; fears of losing control, going crazy or dying.

Common triggers of anxiety for people with disabilities:
Specific Triggers (specific daily life situations): lack of accessibility, logistics of performing daily tasks, i.e. grocery shopping; marital/sexual problems; worries about raising children at various stages of their lives and your disability - financial/employment concerns.
General Triggers (having to do with the physical disability itself, related to fear of losing control over body and over life): the nature of the disease; guilt over disability, feeling responsible; loss of self-esteem or confidence; concern others view you negatively; physical pain; relationship with doctors, care givers, i.e. do they know what they are doing?; why won't they answer my question?
Note: Anxiety and panic attacks or disorders can be treated successfully. If you experience them regularly and they are interfering with daily functioning, please seek professional help. There is no reason to suffer needlessly.

Linda here - I thought this article fit some of us to a T and might help others recognize that they aren't alone and let some see that they are suffering from anxiety and they aren't crazy.

After 56 years with CMT I still get anxious when new things come up. I also find myself agreeing to things that don't suit the new, more disabled me. For instance, a person will ask if I would like to go somewhere with them and, of course, I'll say yes, always looking to get out and about. When I stop and think about it, I have to take into consideration whether our destination is accessible, will their car take my scooter, can I get in and out of the seat in the car, can we find someone to help lift the scooter at our destination, will my sciatica be so painful I can't sit long enough to make the event worthwhile? All of these questions add to the anxiety that floods in after the elation of being asked to go somewhere and knowing I'll likely enjoy it.

Sometimes it all proves just too much to organize and I decline; sometimes I do all the steps that I have to do to take me somewhere and, in the long run, it is usually worth it all. I find that as I age and my CMT gets worse the predictable becomes comfortable but boredom and stagnation can easily set in if you never leave the predictable.

(The article by Michele Green was published in the MS Ontario newsletter Volume 12 Number 2, June 1997.)