Understanding the Lives of People with Rheumatoid Arthritis

Patient Expert
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Dear Family and Friends,

People want to be understood.  Those of us who live with Rheumatoid Arthritis (RA) have the same need.  If people we care about do not understand how our chronic illness affects our lives, we feel invalidated.  Lack of understanding causes pain.

We know that you want to understand.  Somehow we need to explain our struggles and our realities with you.  Acceptance and compassion come hand in hand with understanding.  The peace that results is a wonderful gift to all of us.

We know we do not look sick. Many people with RA and other autoimmune diseases do not look sick. We may have very active RA, and yet we look well.  Our doctors understand that our bodies are full of inflammation.  They understand the damage uncontrolled inflammation can do to a body.  Still, we do not look sick.  This is RA. Note: CRP and ESR are general measures of inflammation. If they are high, they may reflect inflammation of RA, but it can also because by other illnesses or simply an infection.

Of course, if and when you ask us how we are doing, we will say we are fine. Some of you have seemed uncomfortable with the details of living with an incurable disease that exhausts us and makes us hurt.  We know this.  We try to smile and say we are fine, and thank you for asking.  This is RA.

You might want to do some research about RA.  If you choose to do this, you will find a lot of answers to things that may puzzle you.  It is true that we can feel fairly well, and be in intense pain a few minutes later.  This is RA.

It is true that we cannot plan ahead for parties or other social events.  We do not hold off giving you a definite answer because we are trying to be difficult.  We just do not know how we will be feeling the day of the event.  Some of us automatically decline.  It isn't that we don't want to attend the function.  We just do not want to disappoint you, or make you angry if we are unable to show up that day.  This is RA.

Sometimes you say you just don't understand how we could be so tired.  RA causes intense fatigue.  It isn't that we don't want to pick up things for you when we are in town for an appointment, or meet you for lunch.  Sometimes we just do not have the strength to go shopping for ourselves or anyone else. Sometimes we don't have the stamina to "do lunch," or the money to afford eating out.  Our medications are extremely expensive.  This is RA.

Most of us take strong immunosuppressant drugs to control our RA. They can cause intense fatigue for several days when we take them.  We are not lazy.  We are fatigued in a way no amount of sleep can cure.  This is RA.

Sometimes we have to shut people out of our lives, and keep them at a distance.  It isn't because we want to be aloof.  We just cannot afford to be around those who are negative and their constant criticisms.  We choose to be positive.  It is how we survive.  This is RA.

We hope this letter helps you understand how RA and other autoimmune diseases affect your family members and your friends. Your understanding is critical.  We need your understanding.  We need your validation.  We need your love and companionship.

Sincerely,

We who live with RA

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