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Suffering from autoimmune diseases is life-changing, both for patients and their families. Patients need support and understanding from their family members. Autoimmune diseases are often missed because those suffering from them look ‘normal’. Friends and family struggle to understand why loved ones are so tired, frustrated, and unable to keep up with regular activities.
Multiple members of our family suffer from autoimmune diseases as they tend to cluster in families. While this can certainly help to foster empathy within the family unit, you may have friends or relatives outside your immediate family circle that are suffering in silence.
Symptoms of Auto-Immune Diseases
Someone with a broken leg is obviously disabled, however, many people suffering from autoimmune diseases look normal. They can sometimes reach normal activity levels when their condition is in remission. This often leads to unknowing discrimination from others, unaware of how difficult movement and living can be for these patients.
Friends and family members can look for the following signs and symptoms in someone that may have autoimmune diseases that are undiagnosed or unrecognized:
- Joint Pain and Joint Swelling
- Skin Problems
- Abdominal Pain
- Digestive Issues
- Recurring Fever
- Swollen Glands
If these issues frequently pop up, it may be time to encourage a loved one to talk to their doctor. Diagnosing autoimmune conditions can be challenging. However, doctors can run tests to check for some more common varieties. Family members need to learn all they can about these illnesses. It is important to understand that these diseases do not go away. Doctors cannot cure these conditions. Just because someone is diagnosed and may be receiving treatment, that doesn’t mean that these symptoms will go away. Autoimmune diseases may go into remission, but they will become active again. Sometimes they may get worse or get better for no apparent reason.
Helping Loved Ones with Auto-Immune Diseases
There are several ways you can help a loved one suffering from an autoimmune condition. Most of them are things you can do right now, starting today. The first is to offer empathy. Understand that your loved one does not want to be too tired to go out with you. They are frustrated with being sick too. Your loved one does not enjoy being too sick or in pain to be with you. Extend empathy and understanding.
Communicate with loved ones in an understanding fashion. Avoid saying things like:
- “You don’t look sick.”
- “I’m sure things will get better.”
- “I know someone who has the same thing and isn’t having any problems!”
Instead, say, “I’m here for you if you need me.”, and mean it.
Assist with meal planning, encourage regular physical activity, and regularly reassess responsibilities. Remember: a flare-up can severely impact what someone can do in their day-to-day activities. This can lead to feelings of guilt and increased stress which will only prolong a period of inflammation. By regularly communicating, you can step up and assist with chores to ensure they are completed. Providing a helping hand will reduce stress which, in turn, can help reduce a flare-up.
Sometimes what your loved one will need the most is just a shoulder to cry on. Don’t talk; just listen. Be there to hold their hand, give them a hug, and hear what they have to say.
There are days when Grammie cannot get up out of bed. There are days when my pain is so bad I’ll sit and cry before I even try to get on my feet. And then there are days when we feel good. Having people around us that understand how quickly things can change is such a blessing.
Advocate for Loved Ones with Autoimmune Disease
Learn what you can about autoimmune conditions and help become an advocate for your loved one. Autoimmune diseases are often missed or misdiagnosed despite being very common. They also affect women much more than men. Symptoms can be vague, even though they are life-altering. Because of this, doctors often misunderstand or mishear their impact. Help your loved ones get the care they need by learning how to advocate for them.
For more information on Autoimmune Diseases, check out this link from Johns Hopkins: https://www.hopkinsmedicine.org/health/wellness-and-prevention/what-are-common-symptoms-of-autoimmune-disease
or this link from Women’s Health.gov:
http://or this link from Women’s Health.gov: https://www.womenshealth.gov/a-z-topics/autoimmune-diseases