Living with Brain Tumor or Serious Illness and Relationships

Posted by mimispree @mimispree, Dec 20, 2022

I have been participating in Headway in the UK, but I am now glad to find a support group in the U.S.

My treatment began with a diagnosis and resection 30 days later in 2014. The signal something was wrong was trigeminal neuralgia on the right side of my face. I was incorrectly diagnosed as having an Acoustic Neuroma, but after surgery I was told they aren't sure what kind of tumor I have because so many nerves/brain stem were consumed. Long story short, lots of additional surgeries, disability benefits that took 2 years and 11 months, and three bad falls resulting in more surgeries, my problem today is my 33-year once-happy marriage is in tatters after all of this.

I am on disability and my husband gets SS, but our savings are gone because of my medical expenses.

I noted Headway has a Brain Tumor and Relationship Support program that was spot-on, but it's not available to those outside the U.K.

Does anyone have any suggestions? Thank you.

Interested in more discussions like this? Go to the Brain Tumor Support Group.

Welcome @mimispree. Being diagnosed with a serious, long-term illness like brain tumor, cancer, heart disease, neurological condition, autoimmune condition, etc. can stress even the most solid of relationships. Some endure, radically change or completely dissolve, but all relationships are affected in some way.

I believe many support groups touch on this topic. I was intrigued that you found a support group dedicated to serious illness and its impact on relationships. For that reason, I modified the title of this discussion and added it to several support groups here on Mayo Clinic Connect.

Let's use this discussion to create a safe space where members can talk about how serious illness and the impact it has had on their relationships with others – partner, children, parents, whomever. Perspectives of both patients and care partners welcome.

@mimispree, it sounds like your illness caused financial strain that added extra burden to the marital strain too. That's rough. Think of the past week. Was there a moment when you wished you had handled a situation with your husband differently? Was there a moment felt comfort and understanding from your partner?

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I'm going through the same thing relationship wise but not as long. My husband is a stage 5 renal patient. He needed a lot of care is on dialysis 3x a week and I took over every aspect of housework, earning money, shopping, etc. He has Guillain barre syndrome as well and it's been 4 years. Hes on disability for a meager $1000 a month.
We did ok but I was getting tired. One day I collapsed at home and couldn't breathe. They said pneumonia. 6 days ICU 5 on a Ward and released. I was very I'll and my lung ct scans looked bad. On 100% oxygen. No prior symptoms. Not a sniffle!
2 weeks later, collapsed again. They say pneumonia regrow and I was septic. ICU again. Our hospital is small. I was intubated and sent to a large hospital 1.5 hrs away. I was on full life support. Had a bronchoscopy, my lungs washed, tests etc. Extubated 2 days later and sent home to hospital 2 days after that. Discharged a week later. Pneumonia? No symptoms. Interstitial lung disease? Symptoms dont match. Was NPO for 5 days so kidney function 18%.
Can see a pulmonologist! IN 3 MONTHS!!! Jan 3. Hubby had to do for me. I couldnt do for myself. I just couldn't breathe although 02 sats were 92 -96. I was depressed so bad. Am I going to die? Now I'm on EI so our finances were awful. He started resenting me. My 16 year old granddaughter came to live with us voluntarily to help. He soon was yelling at both of us. He told me recently hes happier being alone. That hit me pretty hard. If he leaves, and I cant work, do I get disability too? $1000 a month? I know I have PIC syndrome. I have every symptom but 2. My life has become a mess.

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It seems we have to be our strongest when we're at our weakest. May I suggest applying for disability sooner rather than later. It took three years for my claim.

I am so saddened to read how you are being attacked from so many fronts. My heart is with you.

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@colleenyoung THANK YOU! What you describe is exactly what I have been thinking myself, and looking for. There are so, so many challenges and changes. I do not understand my condition myself so I cannot imagine that others possibly could. A lightbulb moment for me was recognizing the benefit I have in actually feeling it all, sensations in the human body I had absolutely no idea could happen. It is the most horrific and fascinating thing I have ever experienced. I cannot imagine being able to understand symptoms never having experienced them, like providers and loved ones are trying to do. I never feel more lonely than when I am in a group of people/family/friends that are not supportive. Unfortunately, this is what happens. You look up from pushing to survive and realize you are alone. I know others are tired of me being sick. Imagine how tired I am. Imagine how tired my husband is of me being tired. Relationships either break us or carry us through. They are what brings value to our lives. They are what can endure no matter what. So, I have soul searched what I need, who my resources are, who can help me with what (because there is no one person who can fulfill it all), and how I can manage it all in marathon mode. I am learning to grieve losses of expectations not fulfilled, both unrealistic and truly realistic ones that are shattered. When I am encouraged I encourage others. It’s the gift that keeps giving. Prioritizing relationships has been the single most important thing in my life. Thank you Coleen!

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