Advocating for three support sites, people ask me all the time whether I went through emotional tribulations that come with living with chronic illness and pain. They see someone who appears confident and sees the glass half full rather than half empty. On one side of the spectrum and for the most part, I have always been a person who sees the glass half full but I also have seen the glass half empty. Have I ever felt sorry for myself? Sure I have. Have I ever felt like I wanted to give up and that I couldn’t win the fight? Of course, I did and I still do sometimes. I have just learned that making the choice to see the glass half full makes my life a whole lot easier.
Chronic illnesses such as rheumatoid arthritis and fibromyalgia really have devastating effect on your self-esteem and overall well-being. Regardless of the levels of pain you’re in (big or small), the mental and emotional aspects of chronic illness are much more difficult. Chronic illness takes a lot away from you and it forces you to doubt yourself, makes you helpless and powerless and it brings with it fears and anxieties.
I do remember feeling sorry for myself and looking back, I am not sure I recognize that person. When my diagnosis came after a major flare-up (that lasted over six months), I was in no position to feel confident. I was in so much pain and that I didn’t think I could handle life. My ability to be confident was compromised and self-doubt became my best friend. Before I was diagnosed, I thought that finally getting a diagnosis would bring a conclusion to what was happening in me but I found that once I had a diagnosis, there were more questions than there were answers. I wanted peace and what I got was chaos.
That is not a part of my life I like to talk about but I share it because it is part of my road to acceptance. Newly diagnosed patients (and even those with some experience) need justification that their feelings are normal and they want to know that something – anything – will get better. Even someone like me who appears to have it all together when it comes to living with chronic illness doesn’t have it all together. Just like everyone else, I dealt with bouts of sadness and depression. I hate what RA and Fibro took from me. I hate that when I take the stairs I sometimes feel out of breath because I don’t take the steps often due to pain and also because I am not as active as I used to be. I hate all the odd symptoms that appear out of the blue and make me wonder what’s going on. I hate that I forget to mention them at a doctor visit and end up putting them off until next time. I don’t want anyone to see me as a chronic complainer. Like the next person, I do have moments of self-doubt. So, yes, I do feel sorry for myself sometimes.
When a person is first diagnosed, they struggle with the idea of acceptance. They see acceptance as somehow giving in to the disease or giving up. They also wonder if they should just give up. I remember telling myself that there is no use in fighting. Or the idea that no one believes you so you should give in and let them see how sick you are. I even remember wishing that I could just die than feel the way I did. No one ever told me I would get better – especially not my doctors. In fact, my first rheumatologist told me that things would basically get worse for me and I should push aside any long term plans. That would be the rheumatologist I fired.
I learned a long time ago that self-pity was ugly on me. It may be attractive on other people but for me, it makes me look pretty ugly. I think that when we are dealing with self-pity we don’t see how unattractive it is on us. We are too busy self-loathing to even notice but others notice. When someone is showing self-pity, what things do you notice about them? How about complaining, crabbiness and demand for attention and help? Sounds about right. In addition to having an ugly side, self-pity leads to loneliness and sadness.
As I was dealing with two new diagnoses and pain and symptoms that were also new, my family did not enjoy my self-pity stage. In fact, what I thought was lack of support turned out to be a wakeup call. Now granted, not every member of my family was expressively and openly disapproving of my self-pity stage. My younger sister came to visit after my son was born and after that major flare up and took care of me and everything else I couldn’t take care of. She never once told me to get over what I was going through but before she left to go home after my symptoms started to dissipate, she told me that she didn’t recognize me. I continued to think about those words in the days that followed.
The fact is I didn’t recognize myself. I had been through far worse than being chronically ill so what was different? The difference is that I not only felt mentally weak but also physically. I thought back to a time where I felt both and when I felt like I didn’t have anything left in me to keep going. I thought about my kids and if I was too busy feeling sorry for myself, who was feeling sorry for them? This was kind of like my epiphany or eureka moment. Additionally, my family did support me – they just didn’t support the person I had become. They knew that what I had become was self-destructive and they refused to support that. You want to talk about wake-up call! I had alienated my family at my own doing – I had a lot of bridges to rebuild and I did with time. Additionally, I finally thought about what role chronic illness played in my life. After all, I was chronically ill, not terminally ill. I wasn’t handed a death sentence; I was handed a second chance.
I know that feeling completely disillusioned after a chronic illness is part of the emotional process to acceptance and it is something that comes and goes throughout our journeys. However, when we stop just trying to cope to fully understand our illness (as I did), we can make a choice to either to deal with it bravely or we can let it crush our spirits. I know that chronic illness is devastating and the pain associated with it is pure torture. (Trust me, I know.) However, asking and seeking support is different than expecting it, complaining about it and demanding it. That is what self-pity is if you take a moment to think about yourself in your moments of weakness.
So how does one keep up the fight? You take it one day at a time. You get up every morning hoping that today is better. You don’t stay in bed and think hopeless thoughts. You live for today, you do what you can and you don’t allow yourself to worry about things getting worse. Be thankful for all the things you have rather than what you don’t have. Strive for the strength and courage to accept chronic illness with self-respect and humility. Take care of yourself and those who love you and support you. Enjoy the beauty of today and don’t spend your days worrying about tomorrow. This is all you can do and this is all any of us can do.