11 hidden hardships only patients understand, and ways to cope

Credit: Stephanie King.

Leah Brock knows the stress and anxiety that often goes along with being a patient.

As a Michigan Medicine social worker, she helps patients develop coping strategies that allow them to adjust to the health challenges they may be facing.

Brock recently collaborated with a group of patients and a physician to address some very real patient concerns and to develop strategies aimed at helping them thrive, despite their health challenges.

Here, Brock provides 11 different mental burdens, along with tactics, to use to help overcome these difficult feelings.

  1. The Reality: Minding your health feels like a full-time job.

Between taking medications, managing appointments, scheduling tests, following up with providers, documenting your symptoms, going for labs, taking your vitals and following your dietary plan, you often feel like your life centers around your health.

You may feel burned out, annoyed, resentful, frustrated or overwhelmed by the demands of this unrelenting routine.

It may also feel like people on your healthcare teams don’t recognize how hard you work on your health. This can be frustrating when their suggestions make things sound easy.

Coping Strategy: Keep lists of the things you’re responsible for and use a folder to keep everything in one place.

Being organized will help you save time and stay focused. And remember, your healthcare team wants the best possible outcome for you. If you feel overwhelmed, share your thoughts with others and ask to simplify things where you can.

  1. The Reality: Being your own advocate is hard.

While there may be many people involved in your care, the pressure of being the patient can be intense.

Sometimes, it would feel easier if someone else took on the responsibilities and decisions for you.

Coping Strategy: Ultimately, your health is in your hands. It truly is a lot of pressure to be the one in charge of making complex decisions and advocating for yourself, but no one knows what you need more than you. Be confident in yourself and the process and ask for help when you need it.

  1. The Reality: Daily reminders of health seem to follow you around.

A normal day can be cruising along with thoughts of your health nowhere near, but then suddenly, a radio ad promoting a local health system or a medicine commercial pops up and you’re jolted back into the reality of your health condition. Suddenly that carefree attitude is gone.

Coping Strategy: When the reality of your health hits hard, acknowledge your thoughts and feelings, then do something to change your focus: go for a walk, call a friend, delve into a project. Control the things you can control and let go of the rest.

  1. The Reality: There are days when you are completely exhausted or hurting.

Others don’t always understand there are times when you may lack energy or be in tremendous pain.

Coping Strategy: Your exhaustion isn’t about willpower or lack of desire to get things done – you may not have the ability to “power through.”

As uncomfortable as it is to say no, you must attend to your body’s needs, which sometimes means missing out. Think positive thoughts about yourself even on the harder days and say no when you need to.

  1. The Reality: You may know you need help, but you still don’t like asking for it.

No matter how many times it’s offered or suggested, you still bristle at having to ask others for help.

You prefer independence and may even sacrifice your own well-being just to avoid burdening others.

You appreciate the days when no one else is involved in your care and find it hard to express gratitude for those that do help. You are grateful, but the truth is you’d rather be able to do it yourself in the first place.

Coping Strategy: Consider creating a schedule that anticipates and addresses your needs and share it with loved ones. This will minimize how many times you need to ask for help and allows predictability for you and your support systems. Offer to return any favors when an opportunity arises to do so.

  1. The Reality: Your mortality is on your mind more than you would like.

While you plan to live a long life, your health journey has forced you to confront things about mortality that others may not have faced.

Not every person will manage these thoughts in the same way but most agree, having thoughts or questions about death and dying can be scary.

Coping Strategy: Focus on even small attempts to get something meaningful out of each day by seeking enjoyment, companionship and purpose. Remind yourself of the blessings you have known and all the ways you have positively impacted the lives of others. Take time to tell others how much they mean to you and if you have dreams or goals, don’t give up on chasing them.

  1. The Reality: Keeping up with your healthcare provider’s expectations can be hard.

Receiving quality care means collaboration with your healthcare system.

Even though you can appreciate various automated reminders, emails from the portal and supportive calls from your healthcare team, they can be a nuisance. Though you care about your health, sometimes you wish you could go off the grid.

Coping Strategy: It’s okay to periodically disconnect if taking a break makes you feel more content and in control of your life. But electronic communication is here to stay, so accept and embrace the fact that these systems are meant to help, and reengage with your care as soon as you can.

  1. The Reality: You can’t help but think about the past… a lot.

Some of your time may be spent thinking about days from the past when things were less complicated and more carefree.

You’re frequently reminded of all you used to do and you grieve the loss of the former you.

Coping Strategy: Take time to reflect on the positive things in your life. Consider starting a journal to write them down. A sense of gratitude can diminish your feelings of loss. Reframe your thoughts to focus on what you can do, not what you can’t.

  1. The Reality: You are a pro at weathering storms.

Ups and downs in your health are par for your course, and you know better than anyone not to panic when you aren’t having the best of days.

Even while nervous loved ones turn attention to you to make sure things are okay, you stay stoic in facing twists and turns because you have learned that good days often follow bad ones.

Coping Strategy: Continue to think of yourself as a survivor, not a victim. Look for the positives, even in hard times. If you have a setback, take time to grieve but then pick up the pieces and get back to making today worthwhile.

  1. The Reality: You love your specialists, but it can be hard to have so many providers.

You call your doctor about a concern and they reply that what you are experiencing needs to be addressed by someone else.

While it is a benefit to have savvy specialists involved in your healthcare, it can be frustrating to need multiple doctors to feel your best. More providers on your team mean more personalities, more appointments and more information for you to balance.

Coping Strategy: Allow yourself to feel frustrated or upset when something doesn’t go how you had hoped. Ask for clarification from team members about what you can expect and what they need from you. Break things down into small tasks and set time aside every week to get them accomplished.

  1. The Reality: You are a fighter.

Through good days and bad, you continue to find a way to pull yourself up. You have faced scares you would never wish on anyone, yet you have the strength and bravery of a lion.

It takes more than a little health blip to keep you down and those who love and care for you admire and respect your courage, bravery and dedication each and every day.

Coping Strategy: You have this one figured out! Keep up the good work – your healthcare teams admire you and are always cheering you on.

Written by Leah Brock, LMSW.