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How I Overcame the Grief of My Chronic Illness Diagnosis

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Ever look at someone with the same disease as you and think, how do they do it? This happens a lot to me and I’ve found myself thinking the same about others. How do they do it? How do they look put together right now? How are they able to do that but I can’t? Why do they have a mate when I do not? Why are they on less meds? More meds? Why can they work and I can’t? Do you feel jealous of others?

We need to remind ourselves that every case is different. Don’t compare yours to others. You have to accept that, understand you don’t know what is going to come next and you can’t predict the future. Scary and tough spot to be in, I know. I can’t say I am not scared, but I can’t let my fear consume me anymore. I am tired of living behind fear – fear being what has always held me back, especially before when I was “healthy.” Today I look back at my life before, my healthy years and my untreated years. Sometimes I grieve them because I believe I didn’t do enough. I took them for granted.

I was afraid to be myself before my diagnosis. After my diagnosis, I kind of came to terms with it on my own. You have to let it come naturally, but you can do things to help that process. I found reading up on the five stages of grief helped me overcome my diagnosis. You can go through all of these in a day or a year. Some stages stick and you get stuck in a moody rut. You can think you are in one stage and jump right back into another unexpectedly. Something can trigger a stage, life is always changing, our bodies are changing because of disease. Not to mention seasonal depression. It’s OK to get a little emotional about that. It hurts. And we certainly can’t all be perfect.

1. Denial

Denial and anger probably went hand in hand for me at first. I didn’t believe I had arthritis. I thought it was just achy joints. I had my rheumatologist test for me for everything else I could think of. Even others telling me “it’s just arthritis” made it hard for me to accept what arthritis really was. People didn’t believe me about my symptoms and thought I was crying wolf. I stopped treatment for six months and did not see my rheumatologist. I started drinking again. I was angry, impulsive, explosive and destructive. This was before I had to start on immunosuppressants. When I could barely walk and my life was turning into a cesspool of stress, that’s when I took a long hard look at how I was fighting my disease and went back into it full force. I started biologics and started my health journey. When I returned to my rheumatologist, she told me I had what she calls the six-month plateau and what I did was normal. I felt so much less guilt knowing I wasn’t the only one who went through that emotion.

2. Anger

I was at the angriest point of my life during my diagnosis. I had so much going on in my personal life and too much on my plate. I was a single mother, trying to figure out how to get by on disability and learning how to live when you become physically disabled. I lost many family members and friends in this stage. I accept that now, knowing the ones who stood behind me when they understood what was happening to be there and despite my mood still supported me. This was the worst stage to be in for me. I became suicidal, I isolated myself from my old life. I felt betrayed by my family and my friends who wouldn’t understand or be there for me even though they said, “If I ever need anything…” I was angry I couldn’t work anymore. I was angry at the friends who said nothing to me during my diagnosis period. I was angry at the boyfriend who talked poorly of the disabled. That was now me. I was angry at the scene I was involved in and the drama over my life. I was angry at my mother who was not there for me once again in my life. I was angry my father lives in China. I was so angry I tried to push everyone away, even those who didn’t necessarily need to go. And some who did. I had plenty of rights to be angry but that does not matter. Try to drop the anger or control it. Take it out in the gym or in a creative form.

3. Fear

I think the easiest feeling to understand when going through this is the fear that comes with it all.  Who wouldn’t be fearful? I know I must look like I like needles with all my tattoos, but I am even scared of simply having my blood drawn each and every time, even though I’ve had it done more times than I can even think of. I am scared of my pain increasing. I am scared of surgery. I am scared of isolation. I am scared each time I start a new drug. I am scared when I lie awake at night with painsomnia. I am scared of losing my life or my son. But I won’t let fear keep me from appreciating what I still have and I will try to live my life to the fullest with what I’ve got. I have to say, “Fear, not today.” It’s OK to feel fear but do not let that fear consume you. Challenge fear. Know your true strength. Tell yourself you are not scared until you believe it. Don’t ignore that fear, it may be there for a reason. Don’t ignore your health.

4. Grief

Every day I grieve something of my past. An activity I used to love like dancing all night, going to concerts. When I get invited to a concert but know my flare is too much and yet again I will be home and probably in bed before doors. I grieve working tremendously. I try to remind myself to cherish the memories of what once was and work on creating new memories or things I love to do instead.

5. Acceptance

I needed to accept I had become the sick girl pretty bad. I thought I could never get to that point. I thought I was just going to be a burden. The thought of living a life of pain scares me. I am scared but I am also brave and right now I am letting my bravery take control over my fear. Fear is overwhelming. Accepting your illness is you giving yourself 100 percent to the fight. I went even further than that and became an ambassador for my disease. I now feel acceptance in my illness because I know I am fighting as hard as I can. I feel I can keep moving forward now and I am excited for what I can do now.

Here are my suggestions for helping yourself get through the stages. Remember to let them flow. You need to get the emotions out and there is no wrong in letting them out – just be careful and mindful who’s around. I hope this helps someone as it helped me.

– Counseling

– Express yourself and your emotions

– Speak to others who are also sick and ask questions

– Try to be positive, drop the stress in your life or clear it up. Being positive is incredibly important.

– Meditate, yoga, exercise

– Experiment to find what works for you to help with the pain and the fatigue

Good luck!

Follow this journey on Chronic Eileen.

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Originally published: October 30, 2017
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