There are more than 50 million of Americans living with Autoimmune diseases like Lupus, Rheumatoid arthritis, Psoriatic arthritis and Multiple sclerosis. These chronic illnesses can pose challenges to the individuals living with the diagnoses. Often, patients may feel that they are alone grappling with the physical and emotional issues that these diseases present. They may also feel that their physician may not be able to relate to the emotions that they are experiencing.
I have always tried to put myself in my patients’ shoes or try to treat them as if my loved one or friend was handling a chronic disease. I know it is not easy to have to take medications, take numerous days from work or school to attend frequent follow up visits, or put on a happy face to the world when one is struggling just to get through the day. It is not easy having to explain to other people that sometimes you may look healthy but inside you feel like your body is going to collapse.
Sometimes an individual may want to attend a social event, a play or a trip but can’t go because of a flare or just simply has no energy or gas left in the tank. Not being able to participate in your prior daily activities can also leave someone feeling depressed and socially isolated. A person can feel like he or she is missing out on life experiences and socialization.
After a diagnosis of autoimmune disease, I always have my patients come back and sit down for another visit to solely discuss a treatment plan and emotions surrounding the diagnosis. I often stress the importance of creating a loving support group to help them through their illness. The illness is not always severe or characterized by emergencies, however, chronic symptoms are difficult to manage on a long-term basis.
These are some common questions that I get asked by my patients:
Is there a cure for my disease?
Autoimmune diseases are chronic diseases like High blood pressure (HTN) and Diabetes. These diseases can be managed by medication and lifestyle modifications. Symptoms may come and go and even sometimes resolve or go in remission. There is no cure for most diseases at this time. The silver lining is that individuals CAN still lead a productive, healthy and satisfying life despite the challenges.
Let’s all continue to hope and work towards a cure one day!
Do I need to take medications indefinitely?
Most physicians will confer with each other about this topic and do not know the definitive answer to this question. I have no problem admitting this fact to my patients. Some of these conditions can go into remission with the individuals experiencing prolonged “symptom free” periods. Sometimes an individual may decide to try and get off the medication for a period of time if he or she has been clinically stable and assess symptoms after a few months. This important discussion needs to take place between the rheumatologist and the individual to assess risks and benefits of this decision.
Will I have issues with getting pregnant or having a family?
Some of these autoimmune diseases do pose challenges for fertility and sustaining a healthy pregnancy. In some diseases like rheumatoid arthritis, symptoms may improve or women may go into remission during the pregnancy. Usually, a female should make sure that her disease is clinically controlled before considering family planning. Numerous discussions with the rheumatologist, general practitioner and OBGYN physicians or fertility specialists will need to take place.
Do the medications alter my appearance?
Most therapies used to treat autoimmune diseases help to suppress the effects of an overactive immune system causing inflammation. Every medication has its own side effects and poses different risks to each individual depending on the person’s clinical history. Steroids may be one of the therapies used in Lupus, Rheumatoid arthritis, Myositis, Vasculitis and Multiple Sclerosis. Steroids can be successful with decreasing inflammation, however, with time this medication can cause significant weight gain, abdominal bloating, acne, and abnormal hair growth (hirsuitism). I can empathize that these side effects can cause some issues with sexual and emotional intimacy as well as self image. Changes in mood and depression can also be seen.
Talk to your doctor or a therapist if you are experiencing low self-esteem and sadness about your physical appearance or the emotional trauma of accepting your “new life or self”. Depression should be screened in all patients living with a chronic disorder.
Can a healthy diet be the only treatment?
Eating a healthy diet that avoids foods with high sugar, grain and trans-fat contents, alcohol, and caffeine may be beneficial to your immune system. Some individuals will swap a burger and latte for green tea, avocado and salmon or add a little turmeric to soup or veggies like butternut squash.
However, medications are also needed to help reduce inflammation caused by the different molecules and components of the immune system. Each disease has its own specific choice of therapy. Individuals should also be patient with the process of choosing the right medication for his or her disease. Sometimes the initial therapy may not work or be adequate to combat the disease. There are often unpredictable outcomes of these therapies. The “trial period of different medications” can be very frustrating and emotional for the individual and may result in the individual discontinuing therapy.
To all the friends, family members and support groups out there, keep that support going for the long run!