Pain patients often report that one of the hardest trials of dealing with invisible illness is the lack of social support they feel. Their experience with physicians and lay people can go deeper than a hurtful lack of sympathy — and rise to an insulting level of abandonment, disbelief and blame.
How do we combat this? How do we get to a place where we are focused on effectively dealing with our illness, instead of how ineffectively others deal with our illness?
Here are some strategies that have worked for me over the last twenty years:
1. Understand that what you are going through scares people.
When I was going through a divorce, I experienced abandonment from people I thought were my friends. Part of this I know was choosing sides, but not all of it, and that puzzled me. I was still the same person, why did they act like I was suddenly contagious?
In time I realized they were afraid I was contagious. If they didn’t connect with me or hear my story, then they didn’t have to face the scary proposition that what happened to me could happen to them, too. If they could blame me, then they could reason they would never make the mistakes I had made.
When I became ill I saw this fear again, but this time I was able to recognize it more quickly and not take it so personally. I realized that when people tried to blame me, fix me, or discredit me for being ill, in most cases it was because the idea of illness was so frightening to them. They needed to concoct a scenario that would allow them to believe it would never happen to them.
2. Let go of the emotion and state the facts.
Once I recognized that my illness was frightening to others, I learned to tell my story without burdensome emotions. If I didn’t behave as if I was scared, they were less likely to absorb that fear from me.
Everyone has health problems and I am not some alien from another planet. I am a person who endures illness that has no cure, involves chronic pain, and limits my activities and choices.
Ironically, once I was able to just say this without asking for or expecting an emotional, sympathetic response, I was more likely to get one. Instead of getting a lecture on what I needed to do differently, I was more likely to hear about another person who was suffering. Sometimes I learned my friend also faced challenges they had never told me about, but now felt safe to share.
3. Connect with people who do understand.
The Internet and the many outstanding patient support organizations that offer chat rooms, groups and resources means that those of us who live in the ‘kingdom of the sick’ don’t have to be alone and without sympathy, no matter how rare the affliction.
Online groups offer the opportunity to find that needed understanding and support without ever leaving the bed, or meeting in person.
Relationships change as circumstances change throughout our lives. The onset of illness is only one of the reasons and one of the times we may need to reexamine the people in our lives and decide if we want to keep them there.
As I found legitimate support, I learned to let go of the unsympathetic or negative people. Those who were there for me became more appreciated and valued. Making this choice for myself was empowering.
4. Don’t quit until you’ve found the right doctor.
Dr. McDreamy is not going to come knocking on your door and say, “I’m the perfect doctor for you, may I come in and take perfect care of you?”
The responsibility for finding a doctor with the right combination of experience, skill and compassion is on the patient. With pain disorders, it is likely to take a village of good doctors to deal with all the complexities.
I fired a lot of doctors before I found my first great one, but once I began working with him, he introduced me to others I needed. When I moved to another state, I found that first one a lot faster, and with less doctor firing.
I also had to learn that my doctor wasn’t my therapist. The primary goal of our session was not to meet my emotional needs; it was to meet my medical treatment needs. If I needed psychological care, again, it was on me to go find it rather than blaming my physician for not improving my spirits as well as my symptoms.
5. Be more than your illness.
Part of the reason the sick don’t get the sympathy they need, in addition to all of the above, is that we act like aren’t anything but sick. How many times can I expect people to listen to my symptoms, the latest medication or therapy I am trying, and how bad it is and how hard it is, before they tune out?
There may be a few people in my life with this level of constant compassion, but not many. And if I’m honest, I am not one of them myself.
Most people want me to be more than a sick person, if they are going to hang around long term; just like I want my friends and associates to have more than one dimension.
Being sick and in pain is a full time job, no doubt about it. It is hard, confusing, frustrating and exhausting. But if we want to be viewed as a whole person, we have to have more than our illness to share. Whether it is a volunteer effort, a book I’ve read, a comment on the weather, or my own willingness to listen to someone else’s story, it’s a two-way street.
The most freeing part of my long journey with illness has been the occasions when I’ve engaged with people who never found out I was sick — because I never told them.
We had other things to talk about.
Joy Selak lives in Austin, TX. She has been diagnosed with Interstitial Cystitis, Fibromyalgia, Mixed Connective Tissue Disease and Trigeminal Neuralgia.
Her book, You Don’t LOOK Sick! Living Well with Invisible Chronic Illness, takes readers through the four phases of chronic illness experience — Getting Sick, Being Sick, Grief and Acceptance, and Living Well — and is written from the alternating perspective of a patient and her physician.
The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.