Grieving the Former You After a Rheumatoid Arthritis Diagnosis

Grief is real and loss hurts. Here are some tips I’ve learned about grieving my former self and life.

I was formally diagnosed with rheumatoid arthritis (RA) at age 28. Like many, my journey had a lot of ups and downs and took several years. I had a husband, a 1-year-old son, and a 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 I knew would never be the same again. I cried because I had already begun to grieve my former self.

The physical impacts of the disease were listed everywhere, from websites to 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, my career path, my financial planning, and even starting and raising my family. I knew that in one 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.

Join the free RA community!

Connect with thousands of members and find support through daily live chats, curated resources, and one-to-one messaging.

Sign up

The five stages of grief

When you are diagnosed with a chronic condition like RA, your life is truly changed forever. You experience tremendous, sudden, and unanticipated loss. You grieve the loss of your former life, the former you, and the future you had been preparing for. 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 you avoid the inevitable. This might involve denying the diagnosis, denying changes to your life, or any aspect of RA.
• Anger is a redirection of emotions. This stage usually involves blaming someone or something else for your diagnosis or other losses. Anger can create very high energy and you may feel very 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 come to terms with RA and how it plays a role in your life. Acceptance is when there are good days and bad days, and you can take them in your stride. Acceptance is not endorsing or even embracing RA but coming to terms with it. Sometimes a stage of acceptance can involve simply respecting the diagnosis.

People don’t always go through these stages in order. They don’t 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. Not everyone will experience all of the stages. For example, some people may never experience acceptance of RA.

Grieving can be lonely. Over the years, I have found some tips that have helped me through my own grieving process and I would like to share them with you.

Tips to help ease the grief

Grief is real. Loss hurts. Be kind to yourself in this process.

Resist dwelling on the past

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.

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.

Don’t blame RA

Avoid blaming all bad things in life on your diagnosis of RA. Sometimes our problems are just waiting for an opportunity to come out.

With age comes change regardless of chronic condition. 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.

Focus on your strengths

List your strengths and keep them in sight when you get dressed every day. Add to the list every time you have a small win or notice a new strength. There is some truth to that old saying “What doesn’t kill you makes you stronger.”

Personal updating can be exciting

Think about your former life as last season’s clothes that are two sizes too small. They simply don’t work for you for many reasons. It’s time for some new clothes. Personal updating is important.

Celebrate the new you. Do something you wouldn’t normally do. Get a tattoo, change your hair color, or book an exotic trip.

Be friends with your former self

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. Or you could dedicate time each day to talk with an old photo of yourself.

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.

You decide

It may sound somber but it can actually be therapeutic to write your own obituary. Write a speech you would give at your own funeral. You can tell the world exactly how to remember you. This can help you define your own identity, rather than letting the RA diagnosis define you.

The bottom line: You are still you

Throughout your RA journey, it’s vital to remember that all is not lost. You are still you! Some of you has changed, but some of you has not. With or without a diagnosis, we change and develop constantly throughout life. So make sure to celebrate you and do something today that your future self will thank you for.