Medically Reviewed by Beth Hendrickson, RN
We all go through many stages when we are first diagnosed with a chronic illness. My diagnosis was Rheumatoid Arthritis. To some a diagnosis may be a relief after months and years of not knowing what's wrong with your health. For others it may come as a shock. Getting through the emotions that follow and the physical limitations of chronic illness can put pressure on your relationships.
I often hear about spouses, friends, and family members that are slow to accept the life changes that chronic illness brings. Right away you, as the patient, are faced with these changes. You recognize every day that you are not at your physical peak anymore and you may or may not ever get there again. You realize that the medications you are taking may be causing unwanted side effects. You may start questioning, why me? You may be wondering what you did to this universe for it to kick this challenge back at you.
Over time though you may find things begin to get sorted out. You start getting used to your new medications. You make necessary lifestyle and dietary changes. You adapt because that's what we do as humans. You start living your "new normal". You acknowledge your illness and start dealing with it head on. Unfortunately you may be the only one on this train.
Ideally we would like all those important to us to help us through the challenges illness brings. This is where you understand the phrase "you learn who your friends are". You, as the patient, are forced to deal with this monster challenge head on. You may cry, yell, heal, and even get over it. But chronic illness doesn't affect only you, but loved ones as well. They also go through a period of loss, with the realization that you may never be the same. This can take months or even years. It may seem unfair since you are the one coping with being ill, yet you have to deal with friends or family adapting to your "new normal".
What can you do to help a spouse, family member, or a close friend be supportive as possible, but may not know how they can best help you? Below are four ways you can help your loved ones get on the same page with you and your chronic illness.
1. Get Educated
Do you research on your chronic illness. After my diagnosis with R.A. I scoured the Internet for information and talked to medical professionals. Facebook was a lifesaver for me. Also talking to peers in support groups and learning what I could expect were very helpful to me. Once you are educated, then you can better educate those who want to support you. You can't expect them to know what you need if you don't. That's not a fair thing to put on them.
2. Minimize Complaining
When you speak to friends or family, don't make it a big complaining session. You either have a good day or a bad day. Initially you may have to elaborate as to why you are having a hard time and what specific challenges you are dealing with so loved ones can better help you. But after awhile, just keep it short. No one wants to be around a "downer". I learned early on that when someone asks how I'm doing to just say, it's a good day or a bad day. That's enough information to give them cues and they probably wouldn't listen to a long list of your complaints anyway.
3. Don't Take It Personally
It's so important to not be offended by comments from friends or family. Some may think they are giving you a compliment by saying something like "You look fine" or "Oh, my Grandmother has arthritis, you are too young." Comments like these simply show that they are talking to you which means they are trying to relate. Again this is a perfect time to educate them. Respond with a comment like, "Yes, I may look fine but this is a silent disease. I don’t feel fine and this is why".
4. Be Empathetic
You need to remember that as you have lost part of your life, your loved ones have also lost a piece of someone they hold dear. Help them process this. You may not be available as you were but you certainly want them to be a part of your life. They need to grieve the old you and embrace the new you.
I can honestly say that I'm in such a better place than I was before my diagnosis of Rheumatoid Arthritis three years ago. I've been reminded what's really important in my life. My relationships have been enriched. I'm humbled by all the support and people that have offered everything from meals to just sitting with me at the hospital or at a doctor's appointment.
My journey has not been perfect but I've had all those important to me behind me 100% from the get go. Maybe I'm just lucky, maybe it's the tips I used above. Either way I hope they help you help your loved ones cope with your "new normal".
Brigid E. Laurito was diagnosed with Rheumatoid Arthritis in June 2009. Visit her blog at https://www.myrajourney.com/.