Owning your own journey includes telling people how you feel and reaching out for help
Susan Hughes was diagnosed with rheumatoid arthritis – or RA – in 2005. At first, she was terrified and felt isolated.
But, over the years she has taken ownership of her journey and has founded the Dragon Claw support group, which aims to save other people with rheumatoid diseases from the anguish she and her co-founders suffered.
Here are 10 insights from a discussion Susan had with Pfizer’s Chief Medical Officer, Dr. Freda Lewis-Hall:
- The initial diagnosis can be shocking, scary and emotionally overwhelming, but there are other patients and members of the community who can support you.
- Most patients see their rheumatologist for the equivalent of one day a year, so they need to get into the “driver’s seat” for the other 364 days of their journey.
- Family support is important, but it is also essential to reach out to the community and other patients.
- Your pain is invisible and there is no shame in reminding your loved ones or colleagues that you are suffering.
- Learn to be assertive - it’s ok to tell people you need a rest, even when they enthusiastically encourage you to participate in an activity.
- It may be useful to have an achievable goal every day.
- Self-care is essential. Susan swims every day and has a monthly remedial massage.
- Be careful about what you eat and follow your doctor’s dietary advice.
- For Susan, proactive self-caring includes carrying her medication chart with her wherever she goes.
- You need to have open and honest discussions with your doctors and pharmacists about your condition and how you feel.