by Louise Bergeron
“I sought help through the healthcare system like my local CLSC but no one knew how to help me or where to direct me.”
Sometimes in our lives, we all have pain. We all have sorrow. But, if we are wise, we know there’s always tomorrow.
“Lean on me, when you’re not strong, and I’ll be your friend, I’ll help you carry on. For, it won’t be long, ‘til I’m gonna need somebody to lean on…”
Most people will recognize this as being a popular song from the sixties. When I hear this song, it reminds me how important emotional support is in a disease like arthritis.
When I was first diagnosed with inflammatory arthritis and later with Systemic Lupus, I searched frantically, everywhere for help. Trying to get help while feeling so sick was probably the hardest thing I ever had to do. I was in extreme pain and constantly exhausted. So exhausted in fact that just the thought of calling made me discouraged. I sought help through the healthcare system like my local CLSC but no one knew how to help me or where to direct me. I felt as if I was knocking on locked doors. I became angry because I couldn’t get what I needed to understand the physical and emotional turmoil I was in.
Through the Arthritis Society of Canada, I finally found the name of AWISH. My relief came when I joined the AWISH Caring and Sharing group. I found what I had been seeking for months. They understood what I was living because of their own experiences. Through their encouragement, they helped me understand how to live with this disease called Arthritis. It was about one year after becoming very ill that I was finally diagnosed with Systemic Lupus Erythematosus (SLE) and met other people with the same thing. By exchanging information and discussing how to cope with the disease, I got reassurance on how to manage Lupus. Others confirmed by their experience that the approach I was taking, i.e. the right medications, plenty of rest, reducing stress, and proper monitoring, was the right approach. I felt more in control, which made me less depressed, angry, and bitter.
I’ve learned to surround myself with supportive, caring people to regain the best quality of life and I recommend that to anyone. This includes your doctor, your family, and your friends. If your doctor is not supportive, find someone who is.
Educate your spouse while you are educating yourself. Remember they are also adjusting to the shock, anger, denial and depression that you are experiencing and may need support. Some friendships may need a re-evaluation. Since energy levels are not what they used to be, you need to rid yourself of negative relationships. Surrounding yourself with positive relationships helps in the end.
You can also find emotional support by reading books about how to cope with your illness.
Part of learning to cope is learning to accept help. The Internet is also an invaluable tool where chat rooms can help people connect, especially for people who have mobility restrictions. (Beware, of course of unsubstantiated testimonials that sound too good– they are too good to be true.)
Spirituality also offers emotional support by bringing comfort and meaning to life.
Social workers or psychologists, with experience in chronic illnesses, are very helpful.
What is important is to seek this help because you are the only person who can really help yourself.
