Events

The term stress as it is used today was coined by Hans Selye in 1936, who defined it as “the nonspecific response of the body to any demand for change,” which means that when our senses notice any physical or emotional change, our body will respond in either a positive or negative way. If the changes are persistently negative, the outcomes have been noted to cause physical problems such as heart disease, strokes, and even autoimmune disease.

For pemphigus and pemphigoid patients, there are several events that can trigger stress and exacerbate disease activity, even simply being diagnosed with a rare disease. The time it takes to be diagnosed, the medication itself, and how it all affects our families and friends can trigger stress and depression. So the question then becomes “What can we do to normalize our responses to all these stimuli so we can decrease stress, change the course of depression and in turn maybe reduce disease activities?”

Sometimes the answer is medication. If the depression takes over, using medication for a short or long term might be necessary to get back to a calmer, less stressful place. But if the idea of medication doesn’t work for you, there are several other choices to help alleviate both stress and depression.

Therapy

Sometimes just having someone outside your circle of friends and family can make a huge difference in helping to see life differently. One of the most respected tools in therapy is called Cognitive Behavior Therapy (CBT). This type of therapy can help you learn how to deal with your thoughts and can take control of how you interpret and deal with certain stressors. Along with CBT, there is Dialectical Behavior Therapy (DBT) which helps to change negative thinking patterns and work for a more positive change in thinking.

Meditation

Meditation is an effective tool for giving the body and mind a chance to rest. It can possibly help with anxiety, high blood pressure, weight control, and sleep. There are several ways for a person to experience meditation. Prayer is a form of meditation, as is repeating a phrase (a Mantra) as they do in Transcendental Meditation, or practicing mindfulness – being in the here and now.

Hypnotherapy

Hypnotherapy starts with placing a person in a meditative state and uses different tools to bring in positive thoughts through affirmations. When a person is in a hypnotic state the mind becomes open to positive suggestions that can be retained and remembered. It is a myth that someone using hypnosis can be influenced to do things they would never do. In reality a person would never do anything against their beliefs. The person is always aware of the process while it is happening.

Acupuncture

Acupuncture is a great way to relieve stress which in turn can help relieve depression. Acupuncture uses specific types of needles in a quiet, relaxing environment. This type of stress reduction was developed in China over 2500 years ago and is still relevant today. Acupuncture has also been shown to help after surgeries and chemotherapy.

Diet

Healthy eating has also been attributed to helping a person relieve stress and depression and has anecdotally helped with lessening disease activity. Certain foods have been known to make a person feel good for a few moments, but then that good feeling goes away quickly, possibly causing depression. Often the medication for our disease contributes to increased appetite, but being aware and finding other methods to help reduce the cravings can be very beneficial.

These are just some of the ways to help reduce stress and in turn help reduce depression. Each individual has their own way of living with and dealing with stress, depression, and how that might affect disease. 

Stress can play a huge role in health conditions, especially autoimmune diseases.

Symptoms of stress include:

  • Poor or inadequate sleep (insomnia)
  • Anxiety
  • Depression
  • Panic attacks
  • Headaches
  • Poor concentration
  • Muscle aches
  • Skin inflammation (eczema)
  • Inflammation of the joints (arthritis)
  • High blood pressure (hypertension)
  • Stomach ulcers
  • Asthma attacks
  • Exacerbation of disease activity
  • Relapse of disease activity
  • and more

For those of you who have any one of the pemphigus/pemphigoid (P/P) related skin diseases, stress is the number one factor in flare-ups occurring. The mind-body connection is very strong and stress encourages the antibodies to act up and give you more blisters. Trying to stay even-minded is a big challenge. Easier said than done, but with practice, it can be accomplished! Any kind of exercise like yoga, swimming, or taking a brisk walk can be calming and fun at the same time! Meditation is also great tool for relaxing and can be done in the privacy of your home. If your mind wanders…just focus on your breath.

Deep breathing can help to calm down the feeling of anxiousness that stress can cause. You can inhale to the count of 10 (working up to 20), hold the breath for 10 and then exhale at the count of 10. Doing this with your eyes closed should help you to feel more relaxed.

Listening to music can be very relaxing. Dim the lights and lie down, breathe and just let yourself float away! YouTube has great choices if you do not already have your own easy listening library. Examples of music that you could search for are “yoga music,” “relaxing music for stress,” or “calming music for stress and sleep.” There many options available! Just type in the kind of music you want and YouTube has it.

Be creative in your de-stressing activities! Everyone finds activities to be relaxing, and it is important to find what best calms you. Some suggestions for de-stressing activities are:

  • Going for a walk with your dog
  • Going to the movies – especially to see a comedy (laughter can be the best medicine!)
  • Go for a hike
  • Adult coloring books
  • Photography
  • Fishing
  • Gardening
  • Cooking
  • Spending time with friends
  • Turning off all technology
  • Crafts
  • Go to the gym
  • Take art lessons
  • and more!

Anything you can do to take your mind off of the stress of having P/P will be helpful, and is your best tool in addition to what your physician prescribes.

Studies have shown that there is a mind-body connection.  It is known that stress can cause headaches, muscle aches, tummy aches, and blisters!   For those affected by pemphigus and pemphigoid (P/P), when your stress levels are high, the antibodies know when it is time to come out and play.  Horrors!  It is easier said than done to remain calm and stress-free.

Have you experienced when you have a headache and you worry more about something and the headache gets worse?  That is an example of the mind-body connection.

The brain signals the immune system, and we never know until after it happens.  In order to ward off these signals, it is important for patients to remain even-minded.  HA!  You say!  You’re right!  However, there are ways for us to get better at this.  It just takes practice.

Meditation can be very helpful.  Even if only for 5 minutes at a time.  Never feel that you must sit in a lotus position and keep stiff for an hour!  That is not what meditation is about!

There are a lot of meditation videos on YouTube that you could take a look at.  Just type in the word “Meditation” and a lot of suggestions come up!

Breathing exercises are a great way to help keep your blood pressure down. They help to bring a sense of calmness to envelope you.  Essentially, you are inhaling slowly to a count of 10 or 20 and holding the breath for 10 or 20 and then exhaling slowly for 10 or 20.  When you exhale, think of a happy word (like an affirmation) ie: joy or peace.

Having a flare after being in remission can be a scary and frustrating experience. Thoughts run through your head about your previous experiences and you may wonder if your disease will be as bad as it was before. When you have the flare, it is important to recognize it and take the challenge head-on. It’s easy to become stressed from the uncertainty and lack of control, but remember that stressing will only make things worse. Here are some tips to reduce the intensity and time that you may have the flare.

1.      Schedule an appointment with your doctor immediately.

2.      Have your doctor give you a clinical diagnosis or get a biopsy done to confirm the flare. There are many differential diagnoses for your disease so you want to be sure it is what you suspect.

3.      Discuss with your doctor a treatment strategy and begin right away.

4.      Track your disease activity in a log, this will help you determine if you condition is improving.

5.      Follow up with your doctor regularly and advocate for yourself. Seeing your doctor every 4-6 weeks is recommended. If you have an aggressive flare you may need to see your doctor more frequently.

6.      If you need support, contact the IPPF and talk with a Peer Health Coach. Coaches are available to answer questions and help you decide how to best handle your flare.

It is common for flares not to be as intense as your first experience with the disease, but all patients have different experiences. The important thing is to be proactive and stabilize the disease activity as soon as possible. Flares are part of living with pemphigus and pemphigoid but if they are handled quickly and with a positive attitude you can eliminate them sooner.

Remember, if you have questions to “Ask a Coach” because when you need us we are in your corner!