Tear Up the Contract and Communicate with Your Loved Ones

Tear Up the Contract and Communicate with Your Loved Ones

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.

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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.

Kellie “Hurricane” McRae has been dubbed a force of nature. She’s the mother of 2 adults who know she is a force to be reckoned with. Diagnosed with Lupus in February 2016 after multiple hospital stays that had her saying her goodbyes to her family & writing her will she became a very vocal advocate. She has openly shared via Periscope what she calls coping while scoping and has helped many who got a fresh diagnosis as well as those who have been battling for a while. Kellie has taken on the idea that food is medicine and shares frequently the chemical ingredients found in some foods and she also shares recipe’s for great food. Food is medicine is part of her philosophy. After Lupus forced her to walk away from a 17 year career in Real Estate, she began an online business helping others go from “Coping to Cash flow” because not everyone gets approved for disability and still need to pay bills despite the unpredicatable issues that Lupus causes.
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Kellie “Hurricane” McRae has been dubbed a force of nature. She’s the mother of 2 adults who know she is a force to be reckoned with. Diagnosed with Lupus in February 2016 after multiple hospital stays that had her saying her goodbyes to her family & writing her will she became a very vocal advocate. She has openly shared via Periscope what she calls coping while scoping and has helped many who got a fresh diagnosis as well as those who have been battling for a while. Kellie has taken on the idea that food is medicine and shares frequently the chemical ingredients found in some foods and she also shares recipe’s for great food. Food is medicine is part of her philosophy. After Lupus forced her to walk away from a 17 year career in Real Estate, she began an online business helping others go from “Coping to Cash flow” because not everyone gets approved for disability and still need to pay bills despite the unpredicatable issues that Lupus causes.

4 comments

  1. Robin Mutka says:

    And what if you have absolutely no one ? Then what ? My husband resents me and will not help with the housework at all. My house has never been so cluttered. He takes out his anger constantly at me in a anger I would have never imagined him to have. My mom says she has to work till 3pm and lives 30 minutes away so despite begging and I mean begging about to give up, she wont help even on her days off. My sister lives a hour and a half away and every other month is going on these wonderful trips with her family and yet cant come help me for 2 days. Disability pay is a joke. I’m in the negative balance side of my checking so moving to be on my own isn’t an option and my mom said I cant live with her and her husband. My husband told me to get out of his house (we rent) at 3am this morning. I have Expressed suicidal ideations to each of these members repeatedly because I am all alone and so over whelmed and yes I have therapists and psych’s and theyre even at a loss for what I should do. What now ?

    • Kellie McRae says:

      Hi Robin, I’m so sorry to hear of your situation, unfortunately, I am not one to advise anyone on the best course of action for their life. It would be irresponsible for me to try to assess and tell you what you should do. I can say that like I said in the article that what we expect from people is not always what they will deliver. I know that it can feel like a hopeless situation but if you start looking away from those people who are not the best for you and try to find opportunities that will help you, I (being the joy junkie that I am and coming from the background that I come from) believe that things will start to look up BUT if you have communicated your needs and your family is not meeting them, that leaves to question what do you do about it. Suicide is never the answer in my opinion because things constantly change and that is a permanent solution to a temporary situation. Please look in your area to see if there are places that assist with finding subsidized rents that will work with what you get from disability, perhaps look for opportunities to work from home online, I know that American Express, Enterprise rentals and Amazon offer these types of opportunities so you can work from your bed on bad days. I wish you better days but know that where there is a will, there is always a way.

  2. Crystal Ford says:

    I love this article. I have been going through this guilty stage. I communicated this to my husband and he made me feel so much better. It really helps having support at home. For all those that don’t have support at home, there are many support groups out there. It also helps to seek counseling. Thank you for this article! God bless.

    • Kellie McRae says:

      Hi Crystal, thank you for commenting, I am really glad this article resonated with you. Its hard because we have things that we would do and we just for some reason expect others to respond in that way. Sharing your thoughts, feelings and expectations definitely helps get everyone on the same page. Love and light!

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