For better or worse, May is Lupus Awareness Month. Purple ribbons abound and sufferers are patted on the head and given extra “bless your heart”s.
I honestly couldn’t tell you whether or not that is an improvement over complete ignorance.
All of us dealing with lupus, whether we are the patients or the families, friends, and/or caretakers of the suffering, know how isolating the disease can be. Those of us afflicted with lupus lose their careers, their plans, their very future. Those who love us lose the people that we were and all of the things we may have been. It is easy for anyone faced with these losses to lose patience, to lose hope.
Though any light at the end of the tunnel may feel like an oncoming train, there is much illumination to be had by turning to support groups. Notwithstanding the potential benefit, it cannot be stressed enough that all groups are not created equal. In my experience, crummy lupus support groups consist of these characteristics:
- Existing only to complain. These factions are comprised of people that refuse to see the bright side of any situation, ever. They are offended by humor. How can anyone laugh while they are suffering? Furthermore, they refuse to make any adjustments that could improve their quality of life. It is completely normal and necessary to bemoan the daily pain and fatigue and loss, but it is corrosive to restrict your thoughts and offerings to those tragedies.
- Existing to market miracle cures. I’ve seen these run by doctors, and on a scale of moral repugnance, I rank that on the same level as drowning kittens. The most vile in this category also try to rope desperate people into selling snake oil to other desperate people.
- Existing for the pursuit to expose conspiracies. Lupus is not caused by vapor trails, vaccines, or the Illuminati. I concede that lupus and its origins are baffling at best, but there’s nothing to be gained by worrying about fictional demons. If you find yourself in this group, RUN.
- Existing to ask for handouts. It should come as no surprise that lupies often struggle with financial concerns; the physical inability to work doubled with the high cost of drugs, doctors, and testing don’t correlate with a healthy checkbook. However, I find it inappropriate to solicit monetary support those that are likely in the same economic position.
- Existing to shame you for your choices. Smoke weed for relief? You’re a vile hippy. Use prescription painkillers? You’re an addict in the making. Forgo pain management to try and muddle through on your own? You just want to prolong your pain so you can garner sympathy. Everyone need constructive criticism, but this is toxic and demoralizing.
The best groups fit your personality and support your choices without enabling detrimental habits. Much like lupus symptoms, all of us experience communication in different ways. Some prefer physical meetings, the ability to see for themselves others that suffer as they do. Others would rather reach out electronically, seeking camaraderie from the comfort of their home. You do you and find what you’re comfortable with, but know that it will likely take adjustments through trial and error.
Personally, I need to laugh. I need to feel that I can bleed raw truth and have it returned. I need to hear experiences, successes and failures, and be able to reach out to those that understand my disease and all that it entails. I need to know how they cope, and determine if their methods will work for me.
I am blessed with a wonderful tribe. I have understanding children, a loving husband, and supportive friends. Despite this, I still need my lupie sisters (and brothers, uncommon though they may be). No one can understand my trials like they do, and that connection is vital. The cliche, “misery loves company” comes to mind, but I think it is more than that. We need to know we are not alone.
The Wounded Manatee 