What doesn’t kill us, doesn't always make us stronger. Sometimes, we must grieve the loss.
If you broke your leg, you wouldn’t require instruction to not run. It’s the same for our mental health.
In this case, we have a rare disease. It may be aggressive in some patients. It may be inconvenient and unexpected. The diagnosis may affects us and those around us. We may feel guilt. We may feel like a burden. We may feel at fault.
Like many aspects of mental health, acknowledging something is wrong is an important step.
Chronic Illness and Mental Health: Recognizing and Treating Depression
Chronic illnesses, such as TGCT, may make you more likely to have or develop a mental health condition. In fact, patients with rare diseases report that 69% experience depression and 82% experience anxiety and stress compared to 17% of the general population (1).
It is common to feel sad or discouraged after receiving a medical diagnosis or when managing a condition's symptoms. You may be facing new challenges with mobility and may feel stressed or concerned about treatment outcomes and/or the future. It may be hard to adapt to a new reality and how to cope with ongoing treatment and uncertainty that come with the diagnosis. Favorite activities, such as hiking or gardening, may be harder to do at times.
Temporary feelings of sadness or anxiety are expected, but if these and other symptoms last longer than a couple weeks and impact your ability to do daily tasks, you may be experiencing symptoms of depression or anxiety. Depression and anxiety affects your ability to carry on with daily life and to enjoy family, friends, work, and leisure. The health effects of depression and anxiety go beyond mood. For example, depression is a medical illness with many symptoms, meaning it can have physical symptoms. Some symptoms of depression include:
Persistent sad, anxious, or "empty" mood
Feeling hopeless or pessimistic
Feeling irritable, easily frustrated‚ or restless
Feeling guilty, worthless, or helpless
Loss of interest or pleasure in hobbies and activities
Decreased energy, fatigue, or feeling "slowed down"
Difficulty concentrating, remembering, or making decisions
Difficulty sleeping, early-morning awakening, or oversleeping
Changes in appetite or weight
Aches or pains, headaches, cramps, or digestive problems without a clear physical cause that do not ease even with treatment
Suicide attempts or thoughts of death or suicide
Remember: Depression is treatable—please seek help from a mental health professional
Adequate sleep and exercise have been linked to improving symptoms of anxiety and depression. People with depression may find it difficult to fall asleep or stay asleep at night. Some people with depression sleep too much. They can also have excessive daytime sleepiness. If your sleeping habits have changed due to your diagnosis, consult with your healthcare provider.
While TGCT may impact mobility, exercise and physical activity can improve mood, reduce anxiety, and impact overall health. Regular exercise releases feel-good endorphins and other hormones in your brain that enhance the sense of well-being and mood. Consult with a physical therapist or your healthcare team on helpful ways to integrate activities into your routine. Patients often recommend swimming, cycling, or other low-impact activities.
Tips for Talking With a Health Care Provider About Your Mental Health
You don't have to wait for a health care provider to ask about your mental health. Start the conversation. Here are five tips to help prepare and guide you on talking to a health care provider about your mental health and getting the most out of your visit.
1.Talk to a Primary Care Provider/ General Practitioner If you don’t know where to start for help, you may want to consider bringing up your mental health concerns during your appointment with a primary care provider (PCP) or general practitioner (GP). A PCP or GP is a health care practitioner that promotes disease prevention, patient education, and treats general and common medical concerns. A PCP may be a physician assistant or a nurse practitioner or a medical doctor.
Mental health is an integral part of health, and people with mental disorders can often be at risk for other medical conditions, such as heart disease or diabetes. In many primary care settings, you may be asked if you’re feeling anxious or depressed, or if you have had thoughts of suicide. Even if your PCP doesn’t ask you first, take this opportunity to talk to your PCP, who can help refer you to a mental health professional.
2. Prepare ahead of your visit Healthcare providers have a limited time for each appointment, so it may be helpful to think of your questions or concerns beforehand.
Prepare your questions. Make a list of any questions or concerns you want to discuss.
Prepare a list of your medications. It’s important to tell your health care provider about all the medications you’re taking, including over-the-counter (non-prescription) medications, herbal remedies, vitamins, and supplements.
Review your family history. Certain mental illnesses may run in families and having a relative with a mental disorder could mean you’re at higher risk. Knowing your family mental health history can help determine your risk for certain disorders. It can also help your health care provider recommend actions for reducing your risk and monitor for early warning signs.
3. Consider bringing a friend or relative It can be difficult to absorb all the information your health care provider shares. It may be helpful to bring a close friend or relative to your appointment for support, to help take notes, and remember what you and the provider discussed. If you plan to go alone, you can often ask to record the visit to replay it and take notes at a later time.
4. Be honest
It is important to remember that discussions between you and a health care provider are private and cannot be shared with anyone without your expressed permission with very few exceptions. Describe all your symptoms to your provider and be specific about when they started, how severe they are, and how often they occur. You should also share any major stressors or recent life changes that could be triggering or exacerbating your symptoms.
5. Ask questions If you have questions or concerns, ask the health care provider for more information about the mental health diagnosis or treatment. If a provider suggests a treatment option that you’re not comfortable or familiar with, express your concerns and ask if there are other options. You may decide to try a combination of treatment approaches and want to consider getting another opinion from a different health care provider. It’s important to remember that there is no “one-size-fits-all” treatment for mental health. You may need to speak with several health care providers to find the treatment that fits your lifestyle.
People with other chronic medical conditions are at higher risk of depression. For example, conditions such as Parkinson's disease and stroke may cause changes in the brain. In some cases, these changes may play a role in depression. Illness-related anxiety and stress also can trigger symptoms of depression.
Depression is common among people who have chronic illnesses such as
Autoimmune diseases, including systemic lupus erythematosus, rheumatoid arthritis, and psoriasis
Coronary heart disease
And YES, TGCT
Some people may experience symptoms of depression after being diagnosed with a medical illness. Those symptoms may decrease as they adapt or treat the condition. Certain medications used to treat the illness also can trigger depression. Research suggests that people who have depression and another medical illness tend to have more severe symptoms of both illnesses. They may have more difficulty adapting to their medical condition, and they may have higher medical costs than those who do not have both depression and a medical illness. Symptoms of depression may continue even as a person’s physical health improves.
A collaborative care approach that includes both mental and physical health care can improve overall health. Research has shown that treating depression and chronic illness together can help people better manage both their depression and their chronic disease. Recovery from depression takes time, but treatment can improve your quality of life even if you have a medical illness. To find the resources in your country, go to Find Help