If you have had a chronic illness for longer than 12 months, then the chances are that you have already had to face the difficult and emotional task of having to deal with some of these things;
1. Next to no social life
2. Become quite isolated from friends and family
3. Know your doctors / specialists better than your friends / family.
4. Have had to cancel so many plans.
5. Have had to cancel out on invitations to weddings, special occasions, parties, celebrations.
6. Have felt so disappointed and depressed from having to miss out on weddings, special occasions, parties, celebrations that it has kicked of some ‘reactive depression’.
7. Wondered if you will ever be able to predict your ability to do anything again.
8. Gone and done something, just for the sheer thrill of being out of your home, only to find that the repercussions are agonizing and may take days or months to recover from.
What to do?
This is the endless, cyclic question that has haunted me for nearly 10 years now. The never ending quest of having some time with others that will not almost kill you and be able to feel like you are still part of the outside world. Straight up I am going to admit that there are no EASY answers here and all I can tell you, at best, is some of the things that I have attempted to do to try and assure you that I will always be looking for new answers for as long as I live and breathe. That’s just my nature.
Firstly, I try and think about the things I can do.
1. I can type. (for now) which means I can email, Facebook, use online methods of interacting with my friends and loved ones. Skype. Facetime.
2. I can manage to recline and watch a movie. So I thought “Why not invite other people over to watch with me?”
3. I can drink coffee. So I try and drink it with a friend when possible. At my home.
4. Bring back the pajama party! I am going to do MY bit to bring back this childhood joy! I hope to start an epidemic of pajama parties which would make the average 9 year old drool with envy. And even if I can only last for less than 2 hours, and can’t seem to cope with more than a handful of people at a time, they are still going to be the best parties! This I vow!.
5. I am going to make a special attempt to go to an event, if I can, but only for as long as I can make it. If that is 30 minutes, then it will be 30 minutes I have shown someone that I tried.
6. If I cant make it to something, I try and make a special call to them and thank them for their invitation. Tell them how much it means to be included in their thoughts and tell them the invitation means more than they know.
7. I write to them and personally thank them again. An email. A card. Flowers.
You tell your friends and loved ones your limits. For example, the days that are better, what your best times of day are, what you can and cant do, what meds and equipment you will need to take… Honesty is the best! And besides, if they love you and you love them, then you want to be honest.
You may not be in control of your disease or your limitations but you are in control of the way in which you respect yourself and the dignity you bring to your struggle.