One of the most common statements among autoimmune disease sufferers is that those who haven’t experienced the disease themselves or seen a closed loved one suffer often do not believe the level of pain suffered is as severe as we say it is. Lay persons cannot comprehend in this age of medicine that someone would have to suffer as we do so they think that we are exaggerating our symptoms. It is easy to see how they would believe this when our pain and activity levels are so inconsistent. To the lay person it would seem we use our disease as a crutch. That judgement hurts. The lack of support among friends and family of autoimmune disease sufferers is high.
It would seem that loved ones want to fix us by offering remedies that worked for their grandma’s osteoarthritis, by recommending unconventional treatments that can do permanent damage to our corroded inflamed joints and tendons. They can’t comprehend how a joint disease can damage our internal organs, our eyes, our teeth. They recommend herbs and diets. The list goes on all in an attempt to fix us when what we really need is someone to listen, just to be there.
Having a person in your life that listens and understands without making judgements or recommendations to fix you is a key part of coping with autoimmune disease. My best friend is someone who also suffers from sero-negative rheumatoid arthritis. She and I met through an online support group for RA patients. We share our disease, our faith, and our lives. Knowing that she gets it without me having to launch into a explanation is beneficial for my mental health! We lift each other up. We pray for each other. We listen to one another. We don’t compete with each other as to who is sickest, we don’t launch into a full out whine-fest, we don’t belittle or back stab one another, and we don’t criticize each other. We have a very healthy friendship in which we are an encouragement to one another.It is my prayer that you have at least one person in your life like my best friend with whom you can share the darkness and light of living with autoimmune disease without judgement.
If you feel alone in this disease even among a household of people, would you reach out to God? Although I love my friend with all my heart, it is God who has made the difference in me. On my worse pain day, I have the inner peace that I’m not alone. I know that God understands my pain. Prayer and that connection with Him gives me hope that things won’t always be this way and that there is a purpose in my suffering. Pour your heart out to God. He is listening. Just start talking to Him as you would a person. You don’t have to say a flowery rehearsed prayer. Cry out to Him. In Him you will find more than a friend.
It is human for us to want to fix what is wrong in the lives of our loved ones, but we need to realize that we can’t change always change someone’s circumstances. If you are struggling with not being heard in your life, be open with your loved one that you just need a listening ear rather than a fix. If the person really cares about you and your health they should be receptive to helping you by listening.
The following suggestions will help you communicate what you need from your close family and friends. In turn, keep these tips in mind when dealing with your family and friends because they need to be heard as well. We can’t fix our autoimmune disease, but we can change the way we cope with it and how we communicate. Consider the following list in helping you be there for someone in need and communicate what you need from others:
- The best support you can offer is the power of your presence.
- Listen with an open heart. Don’t try to talk out the problem.
- Offer tangible help for physical needs without being pushy.
- If they are crying, share their tears. If they are silent, share their silence.
- Let them know you are available, ready to help – you will always have time for them.
- Remind them that human beings can only do so much, but God can do the impossible.
- Pray for them – and if they will allow you to do so, pray with them.
- Let God carry the burden rather than taking it on your own shoulders. *
*God’s Devotion Book, 2005, pg295