Thursday, March 10, 2011

Friendships Within and Outside of the Chronic Illness Community

I was reading a post, Change: Life Since Accident, by Jamie at Chronic Migraine Warrior that made me think about friendships in regards to chronic illness. She wrote that since her life-changing accident, one of the aspects of her life that significantly changed was her relationships and specifically that her relationships with her friends were "strangely absent."

I found this to be true in my experience too. At the onset of my disabling Migraine disease, there was this rush of support from both family and friends. Friends from work, friends from places I volunteered at, friends from church, and my close friends called, texted, and asked what they could do to help. My first hospital stay for Migraines in early November 2005 lasted four days. I received a multitude of cards and gifts. I was visited by my supervisor from my job, my mom, my dad, probably about eight to ten friends, and my then fiance/now husband. Then days turned into weeks, weeks into months, months into years. Five hospital stays later, I was in the hospital for two weeks in October 2009. George, my husband, was the only one to show up. As it was my sixth hospital stay, I did not need nor did I want my parents to drive all the way up from Kentucky to visit. But, I could have used a visit from a friend or local family member. Sure, people commented on my Facebook status, but really, how hard is that? I guess it is better than nothing...

Life threw me a huge curve ball when I realized that I was losing friends because of my chronic illness. I wasn't in the places I used to be that cultivated those friendships: work, volunteering, church, small group, going out and parties.  Even though, I tell myself, I would not forget or leave a friend who has been suffering no matter what, I cannot expect that others would respond how I would respond. So, I have learned to lower my expectations and accept that my friends have limitations. And over the years I have learned not to blame my lack of connections on my friends. Henri Nouwen says very beautifully in Bread for the Journey,
As people who have hearts that long for perfect love, we have to forgive one another for not being able to give or receive that perfect love in our everyday lives. Our many needs constantly interfere with our desire to be there for the other unconditionally. Our love is always limited by spoken or unspoken conditions. What needs to be forgiven? We need to forgive one another for not being God!

Having disabling Migraines and Meniere's inherently presents problems in maintaining friendships. While my friends without chronic illness have other limitations that affect our friendships; my illnesses are some of mine. When my Migraines or Meniere's symptoms are severe, I am unable to interact with anyone, inclulding my husband, George. When my Migraines are more moderate, it is extremely difficult for me to have phone conversations or in-person conversations. They wear me out and I "pay" for them later with more intense pain and fatigue.

I try to step out of my shoes and into my friends shoes and realize that it is difficult for them too. They do not want to "bother" me. Many say they don't call me because they don't want to bother me with a phone call despite my reassurance that I will not answer the phone if I am not able to and I love getting voice mails. And I imagine after many unanswered phone calls, they may feel they are being ignored or are unwanted. It is complicated.

I find that friendships with others who have chronic illness are somewhat easier than having friendships with those who do not. Friendships with those who are chronically ill require patience, understanding and persistence. And when you are chronically ill, you are more prone to have those qualities in interacting with someone else who has chronic illness because you "get it." We check up on each other and we don't take offense if the other does not get back with us. I have found my friendships with others with chronic illness at times to be more authentic than my friendships with those who are not chronically ill. We usually are more honest with each other about the issues we are facing and how they affect us. We usually go into the details of how we are managing our illnesses and share helpful strategies with each other. We also tend to know what to say or not say when the other is going through a particularly difficult time.
A friend loves at all times and a brother is born for adversity. Proverbs 17:17

I have formed relationships that are as close to me as family with my friends who have chronic illnesses. I do not have any biological sisters, but I have many sisters in the chronic illness community. Adversity has draw us close together. Though these friendships bring me much satisfaction, most of these sisters live in other parts of the country. I wish I had more close friendships with people who lived near me who are not chronically ill. I have had five and a half years practice and I am still trying to figure out how to maintain friendships with those who are relatively "healthy" and lead relatively "normal" lives when I don't live a "healthy" or "normal" life.

How do you maintain your friendships with those who are not chronically ill?


  1. I know exactly what you mean. When I first started having real troubles in college, most of my friends were concerned, but so long as I could keep up my activities, things were fine. But as the migraines got worse through grad school and I had to start backing out of things more and more because I knew I wouldn't feel well enough, they started drifting away. I have lots of "old friends," whom I care about deeply but never hear from. And I have lots of "facebook friends" who maybe comment once in a while but have never considered actually seeing me when I'm in the area.

    Right now, the only real, in person, touchable friend I have is Scott. While I know people care, it seems like it's just too hard for most of them to keep it up, even though my health is actually not bad at all these days.

    So all that to say, I totally understand, and I feel the same confusion on how to forgive and keep up friendships with those who can't understand that my migraine disorder is not just a series of headaches that I complain about. Sigh.

  2. This post really spoke to me, I felt like you were me talking.
    I've tried to talk about this on my blog and I have a "normal" friend who reads it and gets so hurt. But she hasn't been to see me in almost a year. She keeps making plans to but something always comes up.

    I treasure the friends I've made on line who support me and can "get it". But I really miss my local friends, and just don't understand. I'm trying, but it's hard. I have always been the friend who would come to help in someone needed it. I've always been the shoulder to cry on. But when I needed it, they weren't there.

    I lost a friend this past week. She said she was too busy dealing with her life to get involved with my problems. What a blow. We were roommates in college. I've known her for 22 years. I've been there for her through so many situations, now she can't be bothered with me. Oh well, wish I had known this a long time ago.

    I feel that I've invested so much time in friendships that are just gone now. Or at least very rare.

    And I agree, how hard is it to comment on Facebook. Come on, can't you reach out a little more? I announced on FB that I wasn't going to be there any more because I felt it was too impersonal, I told people I would be happy to correspond with emails, and my blog, but no one did that. My father even got upset about me leaving FB. How would he know what is going on with me? Ummm, ask? Or heck, read my blog...oh, but it is more than a couple of sentences's too much trouble.

    Now that I'm feeling better, I'm not sure what to do about my friends. I don't think I can just pick up where we left off...they live right here, why didn't they come see me? Whey didn't they email me?

    It's so complicated, and hard.


  3. I am learning that this is a common trend with people that suffer from chronic illnesses.

    I have watched my relationships somewhat fizzle over the past few years. While I know my friends are still there and I can count on them for anything...I do not go out and socialize anymore. I also feel like I have become unreliable. It's difficult to make plans when you never know how you are going to be feeling at any given moment.