Teresa’s story: “It is comforting to meet people who understand”

Teresa lives with Primary Sjögren’s Syndrome, as well as other autoimmune diseases. In this blog she talks about living with these during the COVID-19 pandemic and some of the support she has received.

I have been well supported during the pandemic via telephone consultations with my doctors and consultants. I was also able to email photographs of problems concerning my skin. These were assessed, appropriate remedies prescribed, and further blood tests requested. A practice nurse then took the blood in the practice car park so as to minimise my COVID-19 infection risks.

My hospital rheumatology department sent me the details of a rheumatology specialist nurse to contact in case I had any problems. I wanted some reassurance about receiving the vaccine and left an answer phone message. To my delight a doctor then called me to answer my questions.

My local support group for Sjögren’s has just started up again and has been excellent at passing on information and keeping the members up to date with events as they arise. It is comforting to meet people who understand the complexities of Primary Sjögren’s. We also exchange tips and suggest products that we have personally tried.

I have been shielding since March 2020. This has been hard as I am normally very involved with family & friends. It is difficult for others to comprehend my risks. As well as Primary Sjögren’s I have other autoimmune diseases and MGUS. The later indicates that I have too much of a certain para protein in my blood. This is checked every four months as there is the potential for MGUS to become Myeloma (bone cancer) and this also increases my vulnerability to COVID-19 & other diseases.

I have become more involved with R2P2, a patient research partnership, and am presently communicating with a PhD student as part of a research partnership. I have also taken part in other online research projects via Zoom. These engage my mind giving some order and focus in a life that is far from normal.

It is hard for others to understand what having a rare and invisible disease is like and to assimilate the consequences. It’s an enemy that stealthily attacks my own tissues, thereby reducing their ability to function adequately. The resultant dry eyes, mouth, skin, IBD, drug allergies, exhaustion, muscle, tendon & joint discomforts, constantly having to pace myself plus many other fluctuating symptoms are all unseen but make coping more unpredictable and difficult.

To the onlooker I appear normal and this can be frustrating. I think that during the pandemic most people affected by a rare disease will have at times felt misunderstood, lonely and afraid because the risks are real.

In my case the harsh reality is that I am immunoglobulin deficient which means that my body has potentially damaged the mechanisms that help to create a good response to the vaccine. Therefore, I am advised to shield until I can be tested to assess my anti-body response to the vaccine. Bad days are more difficult because for the past year there have not been the opportunities to divert the mood by engaging in outings, meeting family and friends, or even a trip to have a café break and for me these might not be possible as soon as I had hoped.

In Summer 2020, RAIRDA published a report based on 1,300 responses to a survey we conducted asking people with RAIRDs about their experiences during the pandemic so far. You can read this here.

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