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Mental Health in Chronic Illness

Mental health is just as important as physical health

People who live with a chronic illnesses like postural orthostatic tachycardia syndrome (POTS), fibromyalgia, chronic fatigue syndrome/myalgic encephalomyelitis, Ehlers-Danlos syndrome, and other invisibile illnesses have a unique set of issues that must be resolved in order to live a fulfilled life.

  • Grieving the loss of your healthy body
  • Social isolation
  • Physicians, family and friends not believing that you are ill
  • Struggling to find your new role in school, work, family, and friendships
  • Biological changes in the brain as part of your illness
  • Mood changes due to medications
  • Being too fatigued to participate in activities that you enjoy

"Counseling absolutely changed my life for the better. I don't know how I'd manage without it - I've been going for it for almost 16 years. It's not that it hasn't worked - just the opposite. It IS working, which is why I keep going! I have different issues popping up at different times. It's like a have to keep putting gas in it or it'll stop running. You have to get the oil changed. Put air in the tires. Our suffering spirits need "maintenance" and "troubleshooting" too!" S.G.

Counseling should be a requirement for anyone diagnosed with a chronic illness. Even if a physician recommends counseling, many don’t pursue it. There are a myriad of reasons, of course, but a big reason is the perception that those who go to counseling are weak. That is far from the truth! Dealing with your mental and emotional health makes you a warrior!

Mental health is just as important as physical health. For many with POTS, the sympathetic nervous system is overactive much of the time, which causes feelings of anxiety. Counseling can help to reduce stress and the physical symptoms that accompany it. Mental health and physical health are intricately tied together.

Consider counseling as an opportunity to learn new tools to help you to cope with your changing reality. Counseling can help people with POTS to accept their limitations, learn to compensate for their illness, and develop an effective support system to help address physical limitations. When your physical life must be altered due to illness, you also need to also alter your thinking and expectations. This is nearly impossible to do without the correct tools. This is especially important for teenagers and young adults who are still developing both physically and mentally.

Counseling is not just for people who are depressed.  People go to counseling for a wide variety of reasons.  Your changing behavior due to illness does not mean that you are depressed.  People who have depression lose interest in activities they used to enjoy. Being too fatigued to participate in activities is not a symptom of depression or anxiety. Emphasizing that distinction is key for you and your family to better understand your illness.  Your counselor can be your advocate to help you accessing the health care system.

Learn to deal with secondary wounding. This occurs when those closest to you, who are supposed to support and protect you, actually hurt you. Perhaps teachers label you, parents are frustrated that they can’t help you, friends think you are attention seeking instead of ill, or your doctor tells you that it’s “all in your head.” None of this is fair, but it happens. A counselor will recognize this and help you to process and work through these wounds.

Learn to recognize feelings, thoughts, and behaviors through cognitive behavioral therapy. This type of counseling takes a hands-on, practical approach to problem-solving. Its goal is to change patterns of thinking or behavior that are behind your emotional upset, and thereby change the way you feel about the situations that are bothering you.

Look for a good counselor until you find the right match for you. You want to find someone who has experience in treating the chronically ill, or is willing to learn.  Just like doctors, not all counselors will be a good fit for you. If start with a counselor that you don't like, find a new one! An unsuccessful pairing the first time doesn't mean that another counselor won't be able to help you. Your mental health is worth it!

The chronically ill are worthy and capable of living a meaningful life. The chronically ill can contribute to society in positive ways. When you are the one who's sick, you might not see how that is possible. Finding the right doctor, combination of medications, and a good counselor can allow you to learn to cope successfully with your limitations.

If you or someone you know is considering suicide, the time to act is now!  The lives of the chronically ill matter!  Please check out this website to learn more about suicide prevention in people with POTS.

How can you find a good therapist?

There are many ways to get the help that you need.  The traditional relationship between a psychologist and their client in an office setting is the most common, but there are others.  Finding the right therapist for you will take a little detective work.  This is definitely not one of those situations in which you call the first name that you see in the phone book.  This website gives you ideas of what to look for during sessions with your counselor to see if s/he is the right match for you.

There are other opportunities to speak with people who can help you, however. If you can't afford counseling or therapy, consider visiting the LifeHackerGreatist, or Buzzfeed site for tips to help you find someone to speak with for free. 7 Cups of Tea is a free and very highly rated service that provides 24/7 "active listeners." These individuals can help you to better understand your issue, and can put you in touch with a psychologist if needed. In their program, you can also take a more active role and become a trained "active listener" for other people.  

If mobility is an issue, rather than a financial strain, there are also opportunities for counseling online.  Inpathy is one opportunity for online counseling that might work for you.