Fifty-plus years of significant health challenges might break anyone’s spirit. Jo, however, emphasizes the practical and positive despite the adversity of a lifetime of managing a host of issues and conditions including asthma, chronic obstructive pulmonary disease (COPD), diabetes and psoriasis.
Jo’s story is an important and fitting reminder during COPD Awareness Month that many people deal with so much each day — physically, mentally and otherwise — that might not be obvious to anyone else. Some, like Jo, resolutely face incredibly difficult circumstances. Here she shares a glimpse of her journey, her uncertain path ahead and some encouragement for others living with multiple conditions.
Health Challenges from Day One
I was born with birth defects, so I’ve always been involved in seeking help and making my own decisions (initially with the help of my parents). At this point, I’ve been dealing with various health issues for 60 years.
I have now been disabled for five years, so I’m fighting for normalcy despite my challenges. The hardest thing about living with multiple conditions is affording the necessary care to live, as insurance companies love to say “no” to the medications or treatments that your doctor(s) recommend.
I can’t say I have a “biggest source of comfort,” as that used to be the high income from my job. [That] allowed me to bypass the insurance hassle and pay for what I decided was needed without having to fight for benefits or involve others in my care choices.
Financial Frustrations
Since I am no longer able to work, I’ve spent through my savings and am on a fixed income, making it even more challenging to get the care I need. I determine my priorities for care based on a palliative care focus. Since I’m at end stage with COPD, and [the] insurance company either wants to kick me off their policy rolls or me to hurry up and die, every decision is focused on not extending my life beyond my ability to live independently.
My supplemental insurance policy will stop in seven short years. Without that extra income, I’ll be forced to live on just my retirement income of roughly [less than half my] current income. At that reduced income, I’ll have to choose between heat or AC, medication or food each month, and it will be very stressful to keep covering all my bills without any breathing room in my finances. Every decision I make involves not outliving my income.
Steadfast Despite Difficulty
While I have already chosen euthanasia if I don’t die of my conditions prior to 2027, they won’t let me painlessly end my life if my reasoning is practical and financial. So I pray every day that I don’t outlive my ability to care for myself, as I refuse to go back to living in a hospital setting. I had that for most of the first five years of my life, and it’s no way to live.
Advice & Inspiration
Focus on quality of life vs. quantity. Focus on doing things you enjoy to keep your spirits up. Refuse to be ruled by fear. Focus on working with doctors who understand that you’re on a tight budget. Do your own research into your conditions and participate in your care choices. Keep active to fight depression and to keep yourself as healthy as possible.
Keep up with outside interests so that you’re not living in your head without adult supervision. Plan each day, week or month for moments of joy and fun. Go for a car ride if you can’t walk far. Go for a walk if you can’t run. Run or bike or do other activities if you can do so safely, without triggering an exacerbation. Whatever it is, focus on being the best version of you each day. Remember that you have a lot to add to your own quality of life.
Reinvent yourself so that you remain part of a larger world, and not a hermit trapped in an unhappy situation who rarely leaves their home. Life is too short to be miserable.
Don’t let your medical situation and related concerns rule your life. Yes, your medical situation is something which happened to you, but it’s not ALL that you are.
Jo C.
Silicon Valley, CA
Lives with lazy eye, asthma, COPD, arthritis, diabetes, nonalcoholic fatty liver disease (NAFLD), incontinence, pectus excavatum, eczema and psoriasis
Are you living with more than one condition? Consider sharing your story with the community.
