It’s challenging enough to live with one chronic illness. Unfortunately, the old tale about bad luck coming in droves often holds true in regards to health. Many people with conditions like fibromyalgia, IBS and migraine disease have multiple comorbidities that make living with and treating their disorders more complex.
However, you have to find a way to adapt — you aren’t a quitter. You are not your diagnoses. You have a lot of life to seize by the horns so you can wring every last bit of enjoyment out of it. Here are five tips for living with multiple chronic conditions.
If you have multiple chronic conditions, you likely see a slew of specialists. Many patients mistakenly believe that the online availability of medical records means that everyone on their care team knows each detail of their health history — but that’s rarely the case.
Although HIPAA allows providers to share your records with other professionals directly involved in your care, they often require you to sign a permission form before doing so. For example, your PCP may ask you to sign a document when referring you to a specialist allowing access to test results.
You have to be proactive, directly asking your providers to access records from other medical teams. For example, just slightly over half of patients receive a follow-up call from their physician after an emergency room visit — but what sent you there could impact your overall course of care. Ask the hospital for copies of your records, including all test results, before discharge. Then, call your PCP.
Support needs vary greatly among people with multiple chronic conditions. Many have dynamic disabilities — they may seem perfectly fine some days but be bedridden the next. Others need support with daily living activities nearly every day.
Your support network typically consists of family and close friends. However, many of them may struggle to understand the nature of your disease. Please treat them gently when educating them about your new limitations.
There’s no substitute for people who genuinely understand your condition. Your physician might have links to support groups, particularly if you have a rare disorder. Otherwise, you can often find such groups online where you can meet with others who relate to your experiences.
Living with multiple chronic conditions is expensive — especially in the United States. For-profit medicine means your bills pile up at the same time you may lose your ability to work. It’s no surprise that over eight out of ten unhoused people have at least one such disorder.
This advice may fly in the face of the conventional “bootstrap” mentality that drives much of U.S. policy — but apply for disability benefits asap if you suspect your diagnoses will impair your ability to work. It can take years and multiple denials to win approval, during which time your bills don’t stop. You can apply by yourself online, although you have a much better chance of winning your case if you retain an attorney. The law limits how much they can demand from the proceeds.
Consider doing it if only for the Medicare benefits and continuation of care if you’re younger than 65. As the U.S. has no public health care option like other countries, it’s the safest way to ensure you’ll maintain insurance coverage and your care team. Otherwise, job loss could spell disaster by cutting you off from needed treatment.
Everyone has a different financial situation, but you should probably begin identifying places to reduce other expenses. Seeking work you can do from home is wise if you run a high risk of complications from infectious disease, and you’ll have an easier time than ever finding such a position, thanks to the pandemic. It’s also not a bad idea to start a side hustle you love that acts as both needed stress relief and a potential alternative income source.
You might take umbrage at first if your doctor recommends adding treatments like mindfulness meditation to your protocol. After all, you have a real disease — don’t you need medicine, not some hocus-pocus?
However, science reveals more about the intricacies of the mind-body connection every day. Holistic remedies treat the complete patient, not merely the cells affected by disease. It incorporates everything from nutritional interventions to acupuncture to yoga.
Keep an open mind, even if you’ve been skeptical about such treatments. Many prove efficacious alone — for example, adjusting their daily diet helps many IBS patients. Others serve as effective complementary therapies and help mitigate some of the stress, anxiety and depression that so often accompany chronic conditions.
You might feel guilty for living with multiple chronic conditions — even though your disorders are not your fault. Few people understand the enormous psychological burden endured by those who are told they should be doing it all — but whose bodies demand rest and healing.
For instance, if your conditions affected your ability to work, you could feel like an abject failure, especially if your identity previously hinged on being one of the most capable members of your circle. Not having the energy to chase your kids around the playground can spur tremendous mom-guilt.
Please treat yourself with TLC. Consider it a healing favor to yourself. Stress exacerbates the symptoms of nearly every disease known to humankind, and you probably already have more than your fair share from coping with your diagnoses. Don’t double-down on your load by burdening yourself with “shoulds.” Every individual is different as is every disease manifestation — if you’re doing your best, pat yourself on the shoulder and reward yourself with the care you need and deserve.
If you’re living with multiple chronic conditions, you have extra burdens to bear. Your disorders may affect every aspect of your life, from raising your kids to engaging in your chosen career.
However, you can create a meaningful life that’s rich in enjoyment and smiles. Follow the above tips for living with multiple chronic conditions and find the path forward to a healthier you.