If you have any kind of a chronic illness, especially if it affects your functioning, you may have experienced the not so pleasant feelings of loneliness and isolation. And if you have a rare disease like Mast Cell Disorder, Ehlers-Danlos Syndrome or Dysautonomia, it is compounded by much of the medical community not being familiar with it plus often taking years to be diagnosed.
As it that isn’t crazy enough, family and friends sometimes don’t believe your symptoms, think your exaggerating, refuse to learn about it or treat you differently. I have some friends who have disappeared because I can no longer go out and keep up socially.
Sometimes it can cause problems in your relationships when your role totally changes from full-time employed person to one who needs assistance. If you were the caregiver, like me, changing roles to the one that needs the care is so very tough on everyone.
So if you find that you are experiencing loneliness, despite family being present and isolation from “normal” people, I have some thoughts about how to gently ease the pain. Remember this… often people’s reaction to us is out of fear… What will happen to us? Will we get worse? Will there be more financial issues? Will my loved one die? How can I work and take care of them?
- That feeling of loneliness is just that… a feeling. Being lonely triggers that scary feeling of abandonment that many of us have experienced. As little kids, we fear our parents would leave us, boyfriends/girlfriends did leave us, friends in school shunned us for new friends, etc. Remind yourself it is YOUR feeling, not a fact. You can be alone and not lonely.
- We often isolate. Out of fear, from lack of energy, frustration from others response to us, feeling not worthy of others friendship. Reach out. First start in a safe place like a support group for your disorder. Online can be less threatening. Then, as you make online friends, see if there is a local support group to meet with the friends in person. If not, check to see if any live in your area. That’s what I did and met the most amazing woman. She came to my house and we had a wonderful visit.
- Even though we can feel so stinking sick sometimes, focus on positive, upbeat things in your life. Look hard. We all have them. Your kids are beautiful. You spouse is hard working. Your apartment is cozy. Your dog is loving and affectionate. It doesn’t matter how miserable your situation seems at the time, you do have good things happening. I write in a gratitude journal every day. Some days, I can only write, “I woke up today.” When you shift to an attitude of gratitude, you are more fun to be around.
- Pay attention to your self-talk. Critical messages like, “No one will want to spend time with me.” is self-fulfilling. Or, “I’m in such pain, I’m not good company.” Give this a try, “I’m going to call my friend and we will talk and laugh.”
- When you are struggling with a chronic illness, you want to be able to talk about it. Share freely with others who are struggling too. Of course you need to let your family know what’s going on, but don’t turn into the “chronic illness personality”. All nurses are familiar with this. Being sick can transform you into a cranky, complaining, unpleasant person. When I worked in the hospital, nurses would know quickly who the chronic patients were. I vowed never to turn into one, no matter how bad my disorders progressed. Talk about something other than your illness. Be a bright spot, not a dark cloud. Be someone others enjoy being around.
- Steer clear of the toxic people. If they are family, decrease the amount of time spent with them. If they are friends, boot them out. Nurture any and all loving, caring and compassionate people, both in person and online. Support is what we are looking for, not someone telling us what we really need to do is heal ourselves and stop this nonsense.
- Being alone and in solitude is not being lonely and isolating. The difference is how you feel. I treasure my alone time and solitude. But those times I have isolated and felt lonely, there was always something else going on. Usually some fear that needed addressing.
- Keep yourself busy, even if it’s in your home. I started coloring with colored pencils in adult coloring books and LOVE it. I also adore all of my plants and care for them with love. Even if you are bed-bound, there are so many things you can do. I know some masto friends who do amazing knitting and crafts.
- One of the most effective ways to channel feelings and emotions is through journaling. It can sound so daunting, especially when you don’t feel well. I tell everyone not to be a perfectionist. Write one word. I have been journal writing for years. Sometimes my one word is an expletive. That’s the kind of day it is. You don’t have to write paragraphs, or even sentences. Write a couple of words. Releasing thoughts onto paper is very therapeutic.
- Take supreme care of yourself. Eat the best food you can, learn stress relieving techniques, drink plenty of purified water, exercise (even baby steps) and manage your disease the best you can. Some day, you will feel well enough to venture out to be with your friends. Until then, do what I do, have them over to your house. Oh… and those friends that don’t bother with you any more because you’re sick and can’t socialize… they weren’t really friends anyway.