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How to navigate a rocky immune system

Those of us with rheumatoid arthritis have a malfunctioning immune system. For us, our bodies misinterpret the synovial tissue in our bodies as foreign and our immune system reacts. Our neutrophils, which are plentiful in our joints already, change from a resting state into an active state. Neutrophils and other white blood cells from other parts of our body move into our joints. Inflammation ensues.

Other people with autoimmune diseases such as Lupus, MS or Type One Diabetes have a similar fate with different targets.

Today there is no cure for our rheumatoid arthritis. But there is medication that will slow the progression of the disease. These medications work by suppressing a particular protein in our immune system. Different drugs suppress different proteins, but all the medications depress our bodies’ ability to fend off invaders. The number one complication of these medications is infection.

We live with depressed immune systems.

A depressed immune system means we are at high risk of developing infections.

Our bodies lack the ability to fight off a passing infection. Those of us who are getting older have a double whammy. As we age our immune system declines.

It doesn’t protect us as well as someone who is younger. We get sick and some of us will die.

What does this mean? It means that we need to take measures to avoid getting an infection. When we are in public, we need to wear a mask. We should avoid crowded gatherings. Unfortunately, it also means that we should avoid the company of someone while they are sick.  

During the holidays we want to spend time with those we love. But being around anyone who is sick puts us at high risk of becoming sick too. Family do not understand what being immune depressed means. And we can’t expect that they know. We need to ask about anyone being sick before agreeing to meet with them. We may worry about hurt feelings. Better hurt feelings that a dead you.

Holidays are tough in this regard. In the rest of the year, we will have situations where we need to decide if it is safe for us. Birthdays. Weddings. Parties. And the list goes on and on.  I talked to another immune compromised person today. Her extended family is not vaccinated. Two of them have covid. She was told not to worry as they will just stay in another room. It doesn’t work that way. Bacteria and viruses don’t stay where we want them to be. She decided to pass on the get together. She said, “I can’t risk it.” Smart.

So, we not only have to deal with the pain and disability of our disease, but we also have to tiptoe through what can be an emotional minefield. Risk or hurt feelings.

There are many people in our community who are immune compromised. There are many who are undergoing cancer treatment. There are many who have had organ transplants. There are all of us who have autoimmune diseases.

We expect the people we know to respect our situation. Yet so many people do not. They just don’t get it. Most people have few, if any, science classes.  Most know where their heart is and that is about all. They just do not understand what being immunocompromised means to a person. We need to learn to live with the attitude of others and we need to let go of the frustration.

Instead, we need to learn to protect ourselves. First it is best to be clear what that means for you.  That means determining what is safe for your health and acting accordingly. Masking in public. Avoiding crowds.  Checking to see that friends and family are well before agreeing to meet. That is called being proactive and that is called being good to yourself.

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