Another elephant in the room when discussing RA besides the intense pain is the eventual social isolation that the unpredictability of this disease causes. No one talks about this except those of us who have RA then when only share with other patients with whom we have a rapport because it can sound like whining to those in our lives who are not ill.
Having been a nurse for 16 years and use to dealing with the public on a daily basis I was not prepared for social changes I was experiencing. First, I felt challenged in my reliability to help fellow nurses on the job. For example, one day I might have the hand and shoulder strength to help a colleague reposition a patient in bed or to a wheel chair and the next day I couldn’t do it. Rather than risk injuring a patient in pulling or repositioning, I would confess that my RA was acting up that day and I didn’t have the ability to safely move a patient. In an era where most hospitals short staff nurses, every nurse had to be 100%. I felt like I was letting down my team. This pattern just continued as I changed jobs three times in a year trying to accommodate my disability which was so out of character considering I’d always worked at a job five years or more before moving on in the past. Finally, in September 2011 I filed for disability.
I’ve always been someone who was reliable and dependable. I was always the go-to person in any job I ever worked. I was always willing to help others and I found this disease was taking all those good qualities I had away from me until I was a shell of myself I didn’t really know anymore. I was in pain, moody, angry, and anything but dependable. I couldn’t (and still can’t) make a commitment to any future event because I don’t know if I’ll be able to literally get out of bed on the day I’ve committed. I’ve grown weary of letting people down. I have to preface every calendar commitment with, “If I can,” vs. “I’ll be there”. After a few of those responses and no-shows, invitations stop coming. Gradually you find yourself spending more and more time alone. After filing for disability, I felt like I just fell off the face of the earth. I was having intense pain and was so depressed. After days on end of no human contact the walls start closing in. Most days the only live human voice I heard was that of my Mother over the phone. To further complicate things, living on a disability income is a challenge in budgeting. The money is not there to go shopping, out to eat, and to the movies on a regular basis which further socially isolates one. Who wants to go shopping with a girl friend who doesn’t buy anything or doesn’t want to go out of town because she can’t afford the gas? Living on a disability income makes one choose between medication and food. All extras are out of the question. If it weren’t for my family helping me with food and medication costs I couldn’t make ends meet. I’m a drag. I feel that no one really wants to know what my day to day struggle is like. I found that people began to avoid me. I once was told I had a joyful spirit and that people loved to be around me because I was always smiling. It was a difficult adjustment to figure out just where I fit in society.
I really didn’t say anything about this social isolation I was experiencing, the depression, and the feelings of failing others because I figured it something I was experiencing because I’m single and live alone. It wasn’t until I was in a RA online group in which one of the participants was having a complete, boo-hoo meltdown because her husband had screamed at her because she could not attend a family reunion. He accused her of just being difficult and avoiding life by wanting to lie on the couch all weekend. As she poured out her heart to our online group she told us that she couldn’t go to her children’s sporting events, that she felt like a bad wife and a bad mom. As we began to have an open chat about it, I realized that these feelings I was having were universal among RA patients and that actually some of those who are responsible for a family have it even worse than I did because they lose their friends and then feel like their own spouses and children turn against them in frustration because they don’t understand the “wishy-washy-ness” of disease. Logic would say if you can do a task today you should be able to do it tomorrow, but that rule flies out the window when dealing with RA. You just don’t know how you are going to be until you get up in the morning and then by afternoon things can change. This disease literally robs us of our lives. So, if you are feeling this way please know that you are not alone. I’d urge you to seek other RA patients for support. You can check with arthritis.org to see if there is an actual group that meets in your area or you can search for the multiple online sources like http://www.rawarrior.com which is Kelly Young’s blog or join her webpage on Face Book. There are several social media sites for patients to join together.
Now that I’ve lived with disability for some time, I’ve learned to adapt somewhat. Now that the chronic pain is under control, life looks a lot better. I still can’t make a commitment to social events or outings with friends or keep an immaculate house, but it’s not all been bad. There have been some positive things in my life since becoming disabled due to RA.
- I have a best friend with RA. I met one of the most endearing of women during my struggle who also has S-RA. I can share my day-to-day struggles with her and laugh about our circumstances. She and I communicate daily online. We are both Christian women and share many similarities in our lives. We have become the best of friends and I can’t imagine going through this disease without her. She get’s it. We all need at least one person in our lives who fully understands what it’s like to live with RA. For many of us the go-to person is not a member of our families. That’s not to say that family isn’t supportive, but they don’t have the understanding that another person dealing with this disease has. Ask your rheumatologist if there is a patient support group in your area at your next visit or reach out and try the resources I’ve mentioned above.
- I’ve also deepened my relationship with God. I have no doubt without His grace and mercy I’d have not made it through the worse of this disease. In many ways I consider my disability my thorn in the flesh as the Apostle, Paul described in his writings in the New Testament of the Bible. Like Paul, my thorn (S-RA) keeps me humble and grounded in my reliance upon the Lord. God has never failed to see me through the storms in my life. I know that I’d still be living the rat race had RA not slowed me down and brought me to my knees in prayer.
- I got a fur baby. Living alone with chronic illness is so isolating. I’d find myself being so lonely. This past April, I adopted a little black and white 3-year-old shorkie (half yorkie, half shih tzu) from a shelter. Her owners surrendered her because they couldn’t take care of her. I fell in love with her at first sight. At first I was nervous wondering if I could care for a pet. I can’t take care of me! I have to rely on my family to help with housekeeping chores, for goodness sake! I will tell you that having Gracie in my life has been like magic. I will do for her what I would not do for myself. She is a reason to get out of bed in the morning because I need to fill her water and food dish. She keeps me company all day and she is just pure love. She even has me walking a 1/2 a block a day on the paved road in front of my house; something I wouldn’t have done on my own because I was so depressed and didn’t want to risk hurting myself. I would urge anyone living alone with chronic illness to try adopting a pet. I have more joy and less sadness now that Gracie brightens my days.
Social isolation is a huge part of RA, but you can find ways to cope with the inability to make commitments and feelings of failing or letting others down. My advise is to be honest about what you can and can’t do. If you commit to a date and can’t make it because of a flare, call as soon as you can and explain the circumstance rather than making an excuse. I’ve learned to say, “please ask me again sometime,” when I have to decline. Also, try to keep the lines of communication open with your family. It’s not easy for them to accept the changes in you. They may not understand every aspect of your disease, but unlike a friend or acquaintance they offer more support and a little communication goes a long way to understanding. Because so much is unknown about RA among the general public, we patients often have to educate those closest to us. It is taxing to try to tell everyone about RA when acquaintances really just want to hear, “I’m fine” in answer to “How are you?”. Save your energy on those who really care. The reality of having this disease is it separates those who really care about you from the fair weather friends. Don’t limit yourself if you can from social settings. Make new friends in the RA community. Take up a hobby that connects you to others. Do something you never thought you’d be able to do and challenge yourself. Lastly, I’d like to encourage you to let God in. God didn’t make you sick but he can help you through it if you’ll ask. You might be amazed how far a little trust in our Lord can go! 🙂