For as long as I can remember I can say that going into a profession like Medicine is about being there for the patient. I’m a better doctor today because every condition or illness I see has a face of a patient or patient experience linked to it.
Most rheumatologists have a very close relationship with their patients because of the complexity of autoimmune diseases and arthritis which are two chronic conditions. There are many visits, phone calls, email exchanges and now virtual visits that compose the clinical experience. It is crucial that there is communication between both parties to make that relationship a success.
From the doctor’s point of view:
- I want patients to know that I understand that having an autoimmune disease or chronic inflammatory arthritis is difficult to live with. It is extremely hard to convince others that you are battling a disease when sometimes you look “fine” to the outside world.
- It is difficult to have high self esteem when sometimes you might have joint deformities or have an inflammatory, scaly or scarring skin disease like psoriasis, scleroderma or discoid lupus which can affect your personal appearance.
- It is heartbreaking to explain why you may not have enough energy to socialize with your family and friends or maybe you self isolate in order to protect yourself from germs. You might also be experiencing depression.
- It is painful when you don’t feel confident or comfortable enough to be intimate with your spouse, boyfriend/girlfriend or partner.
- It is frustrating to not be able to pinpoint a medication that works to control your disease and you must try many other options with possible side effects.
- It is hurtful when people don’t believe when you are sick and think you are just trying ” to get out of working or going to school” by claiming you have a disease that attacks your own organs.
MY WORDS OF WISDOM:
I have always encouraged my patients to
- SPEAK UP
- TAKE OWNERSHIP of their disease
- EDUCATE themselves
- ASK MANY QUESTIONS
- MAKE AN INFORMED DECISION about their treatments and diagnostic evaluation.
- I want you to know that RHEUMATOLOGISTS DO CARE.
Living with a chronic autoimmune condition like Lupus or Rheumatoid Arthritis can be very difficult for the individual as well as the family and loved ones. I can remember spending countless hours listening to different patients speaking about their struggles living with a disability or chronic disease that impairs their quality of life.
Dealing with any chronic illness can result in depression and anxiety for that person as he or she copes with the diagnosis and ongoing struggles. It is important to find support wherever it is available.
Tips on How to Proceed With Finding Help
- Go online! In today’s world, the internet is an important form of communication. Various online support groups exist and people can find encouragement listening to other stories and available resources. Facebook and Instagram groups are great to cheer each other on during the health journey!
- Engage in activities like a national or local walk/run or exercise class to stay empowered and meet new friends! I’ve participated in the Arthritis Foundation Walk before and plan on doing the Lupus Walk this year!
- Group and Family therapy may be beneficial for the patient and loved ones to help cope with the disease. Speaking to your physician to help choose the right therapist or group is important.
- Consider attending the Annual American College of Rheumatology Meeting which highlights recent advances in arthritis and autoimmune diseases. Also, you can meet other patients who can share their stories and you connect with others!
These tips can also be applied to other chronic conditions like Multiple Sclerosis!
Support is crucial to battle this disease but it is out there!