A lupus diagnosis affects more than just the patient. Spouses, children, close friends, and even co-workers are changed when a life-altering diagnosis is delivered. While the person with the disease has physical issues, their diagnosis has consequences for those around them.
For example, a parent with small children won’t be able to participate in some activities due to low energy levels. Spouses will need to step up and take over a larger share of childcare and household chores. Friends will have to understand last-minute cancellations, and co-workers might have an increased workload due to absences or limitations.
Since I received this diagnosis, many of my relationships have changed — some for the better, others for the worse. Following reflection, I’ve arrived at some conclusions about them. I’ve realized that we often have expectations of our loved ones to be there for us. We believe that our children will be mad with us. We assume that our friends and co-workers will be understanding and compassionate.
I shared in a previous column that my family experienced the stages of grief, so I know that they are affected by my diagnosis. But what we expect from our loved ones is our responsibility. We wrote a contract, signed our name, and then forged their signature. We received a diagnosis, but we should not expect compassion just because we’re related by blood. We shouldn’t assume that colleagues will be understanding because their family member has an autoimmune disease. If we have unrealistically high expectations of others, we will inevitably be disappointed.
As someone affected by the ever-changing symptoms of lupus, I have gone through the stages of grief more than once. Your loved ones have experienced these phases, too, during every hospital stay, each new challenge, and every step they’ve taken with you.
We need to be more understanding, caring, and compassionate. And avoid feeling guilty. We often feel guilty even when we know that we didn’t cause our diagnosis and can’t change it. Instead of writing these bogus contracts, I have started to communicate what I need from those around me. I check in with them knowing that while they are not the ones with the diagnosis, they feel the stress of my battle.
I recently learned that my dad was holding back on disclosing personal information. When I confronted him about it, he said, “You’re sicker than I am.” He told me he knows that stress is a trigger for me, and he wanted to avoid upsetting me. I teased him, saying that he’s an old man and I worry anyway because I know he’s not getting any younger. I asked him not to hold things back from me. He had written a contract with me that I wanted no part of.
As my mental health has become misaligned lately, I’m learning that I need to be clear with the people around me about what I need and what I can give. We’re aware that miscommunication can lead to conflict and stress, and situations can escalate when someone disappoints us.
If something is bothering you, speak up. You don’t have to be disrespectful, forceful, or ugly. If it’s affecting you, then it’s probably having an impact on the other person, too. And if they matter, say something. If they are an acquaintance or just someone passing through your life, don’t let their attitude trouble you, and do your best to stay away from them.
I realize that this column reads as if I’m telling you what to do, so let me amend my advice: Do what is best for you.
I find that much of my stress is eliminated by simply speaking up. If the other person is not receptive, then at least I can say that I did my best to get both signatures on the contract. Sometimes things fall apart. I accept that and move on. But my recognition that I am not the only one affected by my disease has changed the way that I communicate with those around me.
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.