RA & Relationships: Avoiding The Isolation Of Chronic Illness

Patient Expert

It is so easy to get in the habit of being alone. Sometimes being alone is fine. There is a difference in being alone, and being lonely.

Isolation is a big issue for those who suffer from a chronic, painful illness. We have a difficult time making plans because we never know how we are going to feel any given part of any given day.

I have read heart breaking accounts from people suffering with moderate to severe RA who have become isolated. It is a universal story. The only difference is the names of the people involved.

Consider this: You can't work anymore, but you stay in touch via email or Facebook with some of your old coworkers. You get invited to lunch and a shopping trip this coming Saturday. You really want to go, but you are afraid you might not be having a good day, and you worry about keeping up with your able-bodied friends. What do you do?

You really only have three options. You could say, "No, I appreciate the invitation, but I won't be able to make it." That option will leave you feeling alone. It may puzzle your friends, and make them think you don't want their company any more. By choosing this option, you choose social isolation.

Your second option is a bit better. You could say, "Great What time should we meet?" and hope that you are doing well that day. Even if you are doing well, you will probably not be able to keep up with your friends on the shopping trip. You may even have to cut the trip short because of fatigue. Your friends will be puzzled because they will not understand.

I have, at times, chosen the first two options listed, and I found myself feeling sad and alone. I didn't want to do that anymore, so I came up with a third option: explaining my limitations to my friends.

Option three is the best way I have found to maintain some sort of social interaction with friends from my life before RA. If they care enough to ask me to spend time with them, I think they deserve to know the reality of what that time spent with me will involve. I have changed, and they have no way of knowing if I don't share what my life is like now.

If I am going to go somewhere that involves a lot of walking, I take my portable scooter. It breaks down into five parts. She is red, and her name is Maggie. My husband can put Maggie in my car for me, but I need someone to lift the heaviest part for assembly, so I let my friends know that I may need a little help putting it together. It isn't all that heavy; it is just too heavy for me.

I have found that being open in this way is a leap of faith and my friends appreciate my confidence in them. Once I have my scooter assembled, I am ready to go. Shopping can be fun when you have a scooter to ease the fatigue and pain of walking.

If my friends would have said they didn't want to deal with helping me with my scooter, I would have declined the outing. Friendship is a give and take relationship.

I have also found that just talking to someone on the phone is a real lift for me, when I cannot get out and about. I have a few people that I check on via telephone about once a week, just to make sure they are okay. I have had some good laughs with some of the older people from our church community. Elderly people sometimes have a great sense of humor, and humor is good for everyone.

Sometimes our families are our toughest critics and are the hardest nuts to crack when it comes to understanding Rheumatoid Disease. I really don't know why this is so, but it is so. Perhaps they just do not want to accept the fact that we have a serious illness. Perhaps they are afraid it could happen to them, too, and so they hang on to denial for as long as they can.

It seems to me the winder months are especially hard on those of us with a chronic illness taking drugs that lower our immune system. Large gatherings of people are perfect places to pick up nasty viruses that always seem to abound in winter. I confess to staying in a lot during the colder months, just to protect myself from sickness.

I have friends who do venture out into crowds wearing those protective masks. I have not tried this yet. I would be interested to hear from those of you who have worn masks in public places. I am curious as to how people may have responded to seeing someone in a protective mask.

Some of the most uncomfortable and unrewarding social situations I have been in are those in which I have been ignored, talked over, and left by the wayside. I quickly learned to avoid these type of situations.

I can only guess at why this happens. Perhaps these "friends" think that I don't have anything valuable to add to the conversation anymore. Why? I don't know. I cannot work anymore, and I can't drive very far, but I am still the same person.

One thing RA has taught me is that true friendships are precious. Some people you thought were friends will abandon you, but some people will stay to encourage you, to laugh with you, and to just be with you. Those are the keepers.