Living with a chronic illness is hard. Living with an invisible chronic illness is harder. I can’t count the amount of times I’ve had to suffer in silence because I was made to feel like I was making up or exaggerating my pain because it was not visible to others.
I know I was married to a man who was not supportive of me in my illness and even mocked my disability after we separated. My own family, before my big flare ups, doubted the extent of damage being done.
It is important to have support from your loved ones when dealing with a chronic illness, especially when stress is a trigger for flare ups. When someone with lupus develops serious health issues they may no longer be able to function independently, they may need a caregiver. The more you know and understand how to cope with lupus, it may make the role of caregiver easier. So I found lists of different ways to better support your loved one with lupus. The Lupus Foundation of America has resources to assist if you are a caregiver of someone with lupus and made a guide How You Can Help Your Loved One with lupus to help.
Be educated about lupus.
- Educate yourself about lupus and the symptoms of the disease.
- Be aware of how lupus is affecting your loved one (physically and emotionally), and pay attention to changes in symptoms or physical conditions that may trigger a flare (ie. being out in the sun, stress, etc.).
- Be open to change. Living with lupus can sometimes call for lifestyle adjustments.
- Be emotionally considerate — feelings of sadness, helplessness, and uncertainties about the future are a normal part of living with chronic illness.
Being a supportive presence in your friend’s life can actually influence how well they can manage their illness both mentally and physically. If you have a friend who was recently diagnosed with a chronic condition (or you would like to better support a friend already managing one), you may not know what to say or do. You might even be wondering if there’s anything you can say or do that will really help. There are many experts that have done the research and learned social support plays a critical role in coping with a chronic illness. When your friend brings up their problems be an active listener rather than immediately offering up advice. Sometimes we just need someone to be present, instead of a problem solver. The issue your friend is having may be one without a solution if it’s something like a life change to meet the new demands of their condition.
We sometimes fall into a trap of injecting our own experience into the conversation, even in a genuine attempt to empathize. Don’t assume your tired and their tired are the same thing. Be flexible with plans and understand your friend may have good days and bad days and it can switch up from one day to the next. Sometimes we may just need a day to rest.
Just be . . there.
A chronic illness by definition means it is not going anywhere. The best way to support your loved one with lupus is to show them you are not going anywhere either. Being there for your friend over the weeks, months, and years following their diagnosis, through the highs and lows, is just as crucial as being there in the beginning. That doesn’t mean you have to ask about their condition every time you talk. It could just be a “Hey, how are you doing?” text every so often—even when things seem to be going relatively well. I have learned dealing with someone with a chronic illness is not pleasant for everyone and I’ve lost people I thought were friends. The moment I land in the hospital, its uncomfortable to think you have to constantly be there for someone in pain.
Don’t make lupus. the focal point of your relationship. Chronic illness is just one factor in your entire friendship. Compassion is important but so is respect. By keeping chronic illness in the proper perspective, this friendship can be rewarding for and meaningful to both of you.
Rosadela Durruthy is founder of She’s Got Lupus, a non profit organization aimed to improve the lives of those living with chronic illnesses by advocating for mental health, healthy living and raising awareness.