I Peter 3:8-9
Finally, all of you, be like-minded, be sympathetic, love one another, be compassionate and humble. Do not repay evil with evil or insult with insult. On the contrary, repay evil with blessing… (NIV)
There seems to be a common thread among all the CFS and fibromyalgia blogs, articles, support pages and Facebook groups. Aside from all the common symptoms we experience, a lot of people are talking about the lack of support, understanding, and sympathy from the people in our lives. So, why do you think that so many people have a hard time accepting our illness for what it is? I have some theories:
1. We don’t look sick. I am a girly, girl. I am the type who never leaves the house without make-up. I used to always do my hair too, but since motherhood happened, I now am quite fond of the ponytail and consider it a decent hairstyle. So, when I show up at church, school functions, and even the grocery store, you will most likely find me “put together”. Illness or not, I enjoy “looking good” and that is something that did not get lost with CFS/FMS. I imagine a lot of you are the same way. When people see me, they don’t see a “sick” person. I’m not exactly sure what a “sick” person would look like to the public, but I certainly am not representing. Chronic pain and fatigue are invisible. We don’t look sick, so people assume we’re fine. But when we start talking about it, we are often viewed as complainers. Which leads me to my next point.
2. They view our health updates as complaining. I really am not sure what to say about this one. There is a fine line between letting your loved ones know that you are hurting or not feeling well and being viewed as “complaining” and that line is usually not determined by us. It is in my personal nature to keep quiet about it unless someone asks or if I hurt so bad that I cannot fulfill my daily duties, then I will simply tell hubby I’m having a bad day. He’s good about taking that cue to help out. We’ve been doing this song and dance for over 15 years, so we have found a routine that works. I rarely go into great detail with him about what is exactly hurting or what type of flare up it is. If he asks, I may just give him a general overview, but he really cannot relate to what is happening in my body. I’m thankful that he has never once thought I was complaining. He’s great like that! 🙂 I find that the best support comes from someone who can actually relate to what you’re going through. Find someone else who is going through chronic illness. This is where online social networking, websites, or local support groups, can really help. Here, we will find people who know EXACTLY what we’re going through and that can be a HUGE encouragement, outlet, and support. Sometimes it helps to just tell someone, anyone about what is happening in our bodies. And having that person completely understand what you’re saying is a great spirit lifter!
3. They want the old you back. When I was diagnosed, there was a grieving process. It took a long time for me to accept the “new normal”. I imagine that for those who are close to us, they have to go through the same process. Yes, we are the ones feeling the symptoms, but we are not the only ones who need to grieve the healthy person we once were. For a spouse, parent, sibling, kids, best friends, etc…, their lives are affected too. The closer they are to us, the more the impact. We need supportive understanding people in our lives, but we also must give our loved ones room to accept how our illness will affect their life too.
4. We are fine one day and not the next. I recently went on a fourth grade field trip with my daughter and her classmates. It was a round trip of six hours in the car and a full day touring historical sights. It was a loooooooong day. I had much anxiety leading up the the trip, because I wasn’t sure if I could handle it physically. I planned well and I made it through the day pretty decently. I had a very busy day the next day too. So, I was fine for two days and put out a lot of energy, but the third day? I was in bed for most of the day with pain and exhaustion. Those people who went on the field trip with me, saw me at my best. They would have no idea that I have health struggles. But they didn’t see the crash and recovery period because of it. It’s confusing for anyone on the outside looking at us. Fine one day and terrible the next. It’s so unpredictable.
5. Our symptoms are irregular, subjective, and not completely defined. Unless you have a flashing alarm signaling when a symptom is creeping in on you, people don’t know. And who wants to be around a person, who is constantly updating you on their physical malice? I get it, but I can’t control when a random CFS/FMS symptom hits in the middle of the day and puts me in bed. This is when years of experience with CFS/FMS comes in handy. Things become a little more predictable if you’ve had it for a long time. If things are about to get bad, I can usually (not always) sense it ahead of time and then I just stay home. Period. Cancel it all. Stay home. Or if it is something extremely important, like my child’s school Christmas program or for you, maybe a job that is paying the bills, then we take the meds, push ourselves and hope we get some time to recover later. The best thing to do is to cut back on all the non-essential things in our lives. Sometimes that choice is made for us. I am constantly evaluating what is essential and building in recovery time. It’s exhausting having to always think that way, but it’s the way I choose to deal. If not, maybe I’d be housebound again.
6. Doctors don’t believe us, so why should other people. This is a hard one. When I was diagnosed in 1997, the majority of doctors knew very little about CFS or fibromyalgia. I don’t know the statistics, but from personal experience I would say that most doctors just don’t get it. I don’t quite understand why ALL doctors don’t accept this as a legitimate syndrome. I’ve heard the theories, but if they could experience what we do for even one day then they would easily be converted. I’ll be honest this particular point hurts my feelings. I had a doctor look at me and basically tell me, the long list of symptoms I had were all in my head. That is really hard to hear, you start questioning your own sanity. But we all know that it is REAL and hopefully one day soon, the entire medical community will be accepting and sympathetic. I can see how a random relative or friend googling fibromyalgia or CFS might come across some of this way of thinking and then have fuel to dismiss our pain. That would be very discouraging!
I referenced the verses I Peter 3:8-9 above because it talks about having sympathy, love, and compassion. These are all qualities that we need to see in the people that are closest to us. Having a dependable support system is essential to any kind of path to wellness. I am BLESSED to have that in my life. I don’t take that for granted. So many people with CFS and fIbro do not have this. Instead, they have people who are condescending, unsympathetic, judgemental, and sometime even hateful. If you are in this situation, my encouragement to you today is to pray for those people. As you desire them to be symptahetic, loving and compassionate, so you must also do the same for them. Educate them as best as you know how on your illness and give them room to accept your “new normal”. Commit your relationships to prayer and ask the Lord to reveal to you which relationships are going to enhance your path to wellness. For those people in your life who cannot be supportive, pray that the Lord will change their hearts. Be kind to them, but be prepared to “weed out” relationships that drain your energies. Wellness depends on shedding as much stress and energy zappers as possible. And most of all, we know that God is ultimately the one who will understand, listen, and hear all of our woes. Keep praying!
For those of you who have unsympathetic people in your life, care to share some thoughts with us?