Where it Began
I was formally diagnosed with rheumatoid arthritis (RA) at age 28. Just like many of you, my journey had a lot of ups and downs and took several years. I had a husband, a 1-year-old son, and both physically and mentally demanding job. On the day I was diagnosed, I left the rheumatologist's office and cried in my car for 20 minutes. I cried because I realized that the life that I knew would never again be the same. I cried because I had begun to grieve my former self.
The physical impacts of the disease were listed everywhere— Websites, magazines, books, pamphlets, and even posters in my rheumatologist’s office. None of these resources mentioned the emotional impact a diagnosis of RA could have. None of these listed the loss of the life I had lived and loved for so many years.
RA seemed to take away the life I once knew overnight. It affected my social plans, intimacy with my partner, career path, financial planning, and even starting and raising my family. I knew that in 1 short office visit, the course of my life was forever changed. It wasn’t going to be what I planned for, expected, or anticipated in any way. The grief of this loss was overwhelming at that time.
A Life Changed
When you’re diagnosed with a chronic illness, like RA, your life is truly changed forever. You experience tremendous, sudden, unanticipated loss. You grieve that loss of your former life, the former you, and the future you had been preparing for. Grieving loss is normal. This grief is normal. It’s important to allow yourself to process this grief.
There are five stages of grief according to the Swiss-American Psychiatrist Elisabeth Kubler-Ross. They are denial, anger, bargaining, depression, and acceptance. Denial is when one avoids the inevitable. Usually denying the diagnosis, the changes to one’s life, or any aspect of RA comes with this stage. Anger is a redirection of emotions. This stage usually involves blaming someone or something else for your diagnosis or other losses. Anger can seem very high energy and active. Bargaining is when you feel very vulnerable or helpless and you start to make deals with other people, God, or yourself, for example. This is usually a state of postponement of feelings. Depression is usually the quietest and most isolated stage of grief. This is usually where you feel the saddest. This is also where many people with RA get stuck in their grieving process. Acceptance is when you have come to terms with where RA plays a role in your life. Acceptance is when there are good days and bad days, and that’s OK. Acceptance is not endorsing or even embracing RA, but being OK with it. Sometimes a stage of acceptance can involve simply respecting the diagnosis.
People do not always go through these stages in order. They do not spend equal time in each stage. One may spend an extended period of time in denial, skip bargaining, spend a short period of time angry, and then cycle back to denial again. Everyone does not experience all of the stages. For example, some people may never experience acceptance of RA.
Tips to Ease Grief
When it comes to RA and grieving the former you, here are some tips to help ease the grief:
Grief is real. Loss hurts. Be kind to yourself in this process.
1) Resist the urge to make the memories of your past life into a blissfully happy fairy tale. The former you was not perfect. Your past self was not naive or stupid, either. There was no way to anticipate this diagnosis. You did not do anything to cause or deserve RA.
2) Stop thinking about the past. It’s a factual circumstance that already took place and you cannot change it. Don’t look back because you aren’t going that way!
3) Focus on your strengths. List your strengths and keep them posted where you get dressed every day. Add to the list every time you have a small win or notice a new strength. By doing this, your weaknesses will strengthen naturally. There is some truth to that old saying “What doesn’t kill you makes you stronger.”
4) Think about your former life as last season’s clothes that are 2 sizes too small. They simply don’t work for you for many reasons. It’s time for some new clothes. Personal updating is important, too!
5) Create a ritual to grieve your former self. Write a letter or record a voice memo to the former you sharing love and saying goodbye. Dedicated time each day to talk with an old photo of yourself.
6) Celebrate the "new you" by doing something you wouldn’t normally do. Get a tattoo, change your hair color, or book an exotic trip.
7) Introduce your new self to your old self out loud. Pretend as if you are both at a party. Take some time to have a conversation. Talk about your likes and dislikes, hobbies, and how you spend your time.
8) Avoid blaming all bad things in life on your diagnosis of RA. Sometimes our problems are just waiting for an opportunity to come out.
9) With age comes change regardless of chronic illness. Try to ask yourself “Would aging cause this?” For example, don’t attribute your slower mile pace, wrinkles, dry skin, or going to bed a little earlier all to your RA.
10) Write your own obituary. Write a speech you would give at your own funeral. You can tell the world exactly how to remember you.
Remember that all is not lost. You are still you! Some of you have changed, but some of you have not.
Do something today that your future self will thank you for!
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About the Author
Ms. Stefanie Remson MSN, APRN, FNP-BC is the CEO and Founder of RheumatoidArthritisCoach.com. She is a family nurse practitioner and is rheumatoid arthritis (RA) patient herself. She has spent her entire life serving the community as a healthcare professional and has refused to let RA slow her down. She has worked with The Arthritis Foundation, The Lupus Foundation of America, Healthline, Grace and Able, Arthritis Life, Musculo, Aila, and HopeX.
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