Sharing the Big “F’s”: Frustration & Feelings

 I started keeping a journal when I was diagnosed with FM 8 years ago. I am now using those journals to identify the issues that I faced, some of the lessons I learned, and to share my journey of coping and healing.

During that first year I felt very lonely because I didn’t know how to talk about my frustrations and feelings with family, friends, and the people I worked with. Maybe I was afraid to talk about them. Almost everyone I knew was aware that I was diagnosed with fibromyalgia because they had been very worried when I got so sick so quickly. Our local newspaper also ran a feature article on someone with FM right after I returned from Mayo with a diagnosis. Because the people around me cared and were informed, they would ask me how I was doing and usually I would say fine and changed the subject. It just didn’t seem appropriate to say things like: I’m angry because I don’t have the energy to get my work done; I’m scared that I won’t get my life back; or, I’m so frigging tired of being tired (or hurting, or crying).

Sometimes I would talk to people about how I felt when it seemed appropriate and I thought I could trust them. Sometimes these people had their own health problems and frustrations. Sometimes my experience became a shared experience that brought us closer together and we ended up having a really good laugh about our situations. But sometimes I was afraid to talk about it and I wanted to avoid people – I just went home and hid. I was looking for a way to let people know how hard life was so I didn’t feel so lonely but I didn’t always know how to do it. If I said too much, I was afraid that I would be seen as a whiner and complainer and it would make people want to avoid me. Deep down I felt weak and defective and didn’t want people to see that part of me. What I learned: If I don’t share my frustrations and feelings, I will be lonely. I will become even lonelier if I talk about my frustrations and feelings with the wrong people, at the wrong time, and too much.

I discovered through the grapevine at work that there were other employees who were diagnosed with FM. At first I thought that we could support each other but I soon discovered that they didn’t seem to want to talk about it either. Maybe they felt like me; living with chronic pain and fatigue while trying to get my work done took more endurance than I had. The few times we did talk about it, it felt like they also needed to pretend that everything was “normal” so they could make it through the day. I suppose we could have shared ideas for what helped with symptoms, but this made for a very short conversation because there didn’t seem to be many options and what worked for one didn’t seem to help the other. I wanted to know what others were experiencing but talking about how miserable we were got boring really fast. Besides, I preferred to do my crying in private.

Copyright © Patricia A. Bailey and I Miss Me, Too/imissmetoo.me 2012-2013.

Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Patricia A. Bailey and I Miss Me, Too with appropriate and specific direction to the original content at: http://imissmetoo.me 

Talking About Pain

During the first year I found that being sick brought up a lot of old, unresolved issues. It makes sense that having a chronic illness that decreases our functioning and increases our need for help from others would bring up issues around dependency, asking for help, and self-esteem. It can also bring up idiosyncratic personal issues, and a huge one for me was understanding, communicating and coping with pain. This was my favorite journal topic during that first year. I struggled to know how and when to communicate pain to others, especially those who were helping me most often – my husband and doctor.

I made the decision as a 4 year old that I wasn’t going to tell anyone about my pain, ever, and I would take care of myself. I had been badly hurt by a family member and I learned that if I told anyone about my physical pain they would create even more pain and I couldn’t handle any more. This was reinforced throughout my childhood by being told, “Stop your crying or I’ll give you something to cry about.” As a child I couldn’t understand the logic of that statement and I still don’t.

As an adult, I remained true to this decision and even when I experienced very intense pain, I didn’t tell anyone until I would end up in the emergency room. I don’t think I developed a voice for pain or learned the social “rules” for pain. Psychotherapy taught me how to talk about my emotional pain but I still hadn’t learned how or when to communicate physical pain.

I had an excellent comprehension of emotional pain, but felt like physical pain was an incomprehensible language. I wrote in my journal:

If someone tells me they are hurting emotionally, I know exactly what they mean. When I think of physical pain, my own or others, I don’t seem to know what it means. When someone tells me they are hurting emotionally, I don’t need to know “how much” or “how intense” to feel drawn to them and want to help them. When I feel physical pain, I get caught up in needing to judge whether it is severe or mild and believe that no one could possibly be drawn to me and want to comfort me. In fact, I am still very hesitant to talk about my physical pain. And fibromyalgia pain makes it even more difficult because there is no open wound or broken bone. It doesn’t seem real, even though my experience is very real. The pricking in my legs and hands right now feels no different than if there were sharp little pins in my clothes. My body responds to the pain with nausea and high blood pressure. The pain wakes me up at night and causes me to jerk. 

It seems like pain is such an overwhelming part of my life but a part that isolates me from people instead of bringing connections. I don’t want my relational connections to be because of pain. I know how human connection can heal emotional pain, but I don’t know how human connection can heal my physical pain. I know that I am the one who makes my pain isolating. I am the one who lies and changes the subject when people sincerely ask me how I am feeling. I only take my pain seriously when it causes me to cry or creates symptoms that are real for me, like mental fog and breathlessness. (Personal Journal, 05/04)

When pain became a part of every day, when would I say to those who care about me that I am hurting? When my pain isn’t life-threatening, in fact isn’t even a symptom of a fixable problem, why would I say anything to anyone? My husband asks me how I feel and I don’t know what to say. If I say great, I feel like I’m not being true to myself and should be able to be as active as I was before I got sick – and as involved in his life as he was used to. On the other hand, it would be a real bore for him to hear every single day that I hurt. In the early years, even if I had said “better than normal” or “hurting more than normal” I don’t think he would have known what to do with it. What I felt I needed was for him to understand that I might not feel good enough to do something one day, but not assume that I would feel the same the next day and most importantly not to tell me when I shouldn’t do something.

My husband had gone through the Fibromyalgia Program with me at Mayo which helped him know when to take charge and help me do the things I needed to do, like stay active and exercise. He also suggested that I slow down when I needed to hear it. I think I was really hard to live with in that first year because I didn’t want to talk about pain and was very conflicted about needing and wanting help. I wanted to be competent and independent like before.

Comment from my husband:    It was really frustrating to see the person I love being so sick and not know how to help. It was difficult and painful for me, too.

Copyright © Patricia A. Bailey and I Miss Me, Too/imissmetoo.me 2012-2013.

Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. I encourage you to use excerpts but please be sure to give full and clear credit to Patricia A. Bailey and I Miss Me, Too. Please also give specific direction to the original content by provided this Blogs url at: http://imissmetoo.me