Sarcoidosis patients are used to talking about their physical complications, since both the disease and its treatments can cause so many physical symptoms. Chest pain, aching joints, debilitating fatigue, shortness of breath, or whatever else your most recent flare-up has thrown at you. Sarc patients commonly talk about these things to their doctors, caretakers or other patients. But what about the emotional effects of their illness? What about the anxiety and depression, or emotions like anger, confusion or frustration? These issues are normal and common in someone with a chronic illness (and people without them), so why is embarrassment or shame often our first reaction when we talk about mental health?

May is Mental Health Awareness Month, and we thought it was time to talk about the mental and emotional effects of living with a rare and chronic disease. Being chronically ill opens the door to so many factors that can cause additional stress or challenges for people. Challenges like:

  • Your illness is often not understood, even by your loved ones. Unless they’ve dealt with chronic pain and debilitating fatigue, they may have a hard time understanding why you sometimes don’t have the energy for everyday things or to spend time with them.
  • Chronically ill people can be made to feel like a burden on their loved ones, which puts a strain on these relationships- the very relationships that are supposed to be the foundation of your support system.
  • Since sarcoidosis is typically an invisible illness, people face accusations of “faking it” or “looking for attention.” This can be hurtful, especially when it’s coming from a loved one or a trusted medical professional. This can drive people to withdraw and isolate themselves from others.

If all of these social repercussions of a chronic illness weren’t enough, throw in stress about health insurance, pricey medications, being unable to work, wondering what your future will look like… AND, on top of all of that, let’s not forget about the chronic pain.

Chronic pain can be one of the most frustrating and exhausting things to deal with. It can make you feel completely out of control, with no hope of it ever going away. It is not uncommon for those who live with chronic pain to experience severe anxiety, depression or contemplate suicide. Stress, lack of sleep, and social isolation are all distressing things that sarc warriors deal with, and all can be compounding factors when it comes to mental health. Rather than gloss over these feelings or statistics, we need to talk about them, because they happen more often than we admit and should never be ignored. FSR strongly encourages all sarcoidosis patients and caretakers to practice good self-care. By incorporating these practices into your daily life, you can take control of the aspects of your mental health that you’re able to, and you can be better prepared to deal with the things that are out of your control.

 

Manage Stress:
Living with a chronic illness means you can’t always do everything you used to. It’s frustrating, and it’s not fair. Rather than trying to battle insane fatigue while keeping up with your full schedule, decide what’s important to you and prioritize it. This doesn’t mean you should completely withdraw, but let yourself off the hook and skip the things that aren’t as important. Don’t be afraid to take time for yourself. Even if you’re balancing a hectic schedule of work and family responsibilities, something as small as a morning cup of coffee or noticing the neighbor’s flowers each day can be a special moment just for yourself. If you do have the time, consider meditation or other acts of mindfulness to help alleviate your stress. A study of mindfulness-based therapy in patients with inflammatory rheumatoid arthritis found improvement in fatigue, self-care and emotional processing of chronic pain.

Eat Well:
While there is no one diet that has been found to be beneficial to all sarcoidosis patients, eating a healthy diet will absolutely help your mental health, and potentially your physical health as well. For some, the idea of cooking a healthy meal is exhausting, but it doesn’t have to be! See these tips to make eating healthy easier or check out these quick, healthy and budget-friendly recipes.

Stay Active:
It’s extremely frustrating to feel physically limited, especially for those who used to exercise all the time. It can also be extremely frustrating to be told to stay active when you have chronic pain, fatigue, not to mention pulmonary, cardiac or neurological symptoms. However, research from the Netherlands such as this study and this one has shown that even very moderate physical activity levels may help reduce certain symptoms and improve overall quality of life. Read a recent story from a sarcoidosis patient who has improved her physical and mental health through exercise and has even worked her way up to running 5Ks!

Find A Support System:
Even if you have supportive family and friends, there’s no harm in trying a support group. Having meaningful discussions with other people who know exactly what you’re going through can be so valuable. If you want to connect with other sarc warriors but you’d prefer some anonymity or there isn’t one near you, try the Stop Sarcoidosis group on Inspire.com. This online support community allows members to create a username and chat with other sarcoidosis patients and caretakers, covering a large variety of topics and allowing people to offer their support and guidance.

In person support groups can offer a more personal experience and connect you with others in your area who are going through similar life changes. If you’re looking to find a sarcoidosis support group in your area, you can use FSR’s online support group directory for reference.* If you can’t find a sarc-specific group in your area, consider trying a chronic illness or rare disease group instead- they’ll probably still have a pretty good understanding of what you’re going through!

Know Where to Get Help:
In part this help can come from loved ones or a support group, but there are times when more intervention is needed. Talk to your doctor if you think you’d benefit from regular assistance in managing your emotional stress. If you are ever feeling anxious or depressed, or if you ever experience suicidal thoughts, please call the National Suicide Prevention Lifeline at 1-800-273-TALK (8255) or the National Hopeline Network at 1-800-SUICIDE (1-800-784-2433). These toll-free crisis hotlines offer 24-hour support, active listeners and suicide prevention- all calls are free and confidential.

You can also text the Crisis Text Hotline at 741741– if you’re in the US, simply send a text and immediately get paired with a specialist to help with any situation. Messaging fees do not apply for AT&T, T-Mobile, Sprint, or Verizon users (it’s absolutely free!) and will not show up on a phone bill. Standard messaging rates apply with other carriers, but the hotline itself is always free and completely confidential.

To find a suicide helpline outside of the US, visit IASP or Suicide.org.

 

 

*Because support groups are constantly changing their leaders, locations, meeting times etc., it’s extremely difficult for us to keep our directory up to date. If you attend or run a sarcoidosis support group in your area, let us know! We’d love to add you to our directory and be able to direct newly diagnosed patients your way! If you are already listed in our directory, please check and make sure your contact information is correct and that it’s the best way to reach you! Email maggie@stopsarcoidosis.org to update or add your group! Please be sure to include updated information for all fields: Group Leader Name(s), Group Leader Email(s), Group Leader Phone (optional), City and State, additional meeting details (i.e. we meet on the second Saturday of every month)

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