Suffering in Silence: Life with Autoimmune Disease

For those unfamiliar with autoimmune disease either personally or by association, the best description I can give is your immune system, which keeps you healthy, begins attacking healthy cells – your body essentially attacks itself. There are a multitude of autoimmune diseases: Rheumatoid Arthritis, Lupus, Celiac’s Disease, Scleroderma, Psoriasis, Sjogren’s syndrome, Ploymyalgia rheumatica, Pernicious Anemia, Multiple Sclerosis, Type 1 Diabetes, Chrohn’s Disease, Vascultitis, etc.

According to the American Autoimmune Related Disease Association (AARDA,) over 50 million Americans are affected by autoimmune diseases with over 80 types of known autoimmune diseases. Autoimmune disease can run in families and 75% of those suffering from an autoimmune disease are women. African-American, Hispanic, and Native Americans have an increased risk of developing an autoimmune disease.

As with many diseases, autoimmune disease can have stages from systemic to remission. As a point of clarification, I’m not officially diagnosed with an autoimmune disease. My entire life I have lived with a loved one who has multiple autoimmune diseases. I also have friends with autoimmune diseases, especially conditions that became prevalent after college.

My blog post isn’t just an autoimmune disease awareness post, but an exploration into living with those silently suffering with these diseases.

 

auto immune disease
What Can Aggravate an Autoimmune Disease?

 

  • The Dignity of the Human Person: “A person is an entity of a sort to which the only proper and adequate way to relate is love.”- St. John Paul II, Love and Responsibility. Tragically, our culture maintains a mostly utilitarian and social Darwinist approach to the dignity of the human person- if you can’t quantify the worth by the socially accepted rubric it ain’t there. I’ve witnessed the very real, painful struggle of a loved one clinging to their intrinsic worth and dignity while the world feeds them lies about how they are a burden on their family, loved ones, community, and society. A person is person regardless of form or function. Even the sickest or most deformed and seemingly inconvenient person is a child of God and reflects some aspect of the divine. Love bears all things and believes all things. Love rejoices in the truth.
  • People vs. Things: As the graphic above depicts, everyday life can be life threatening to a person with an autoimmune disease, especially a person facing a systemic autoimmune disease. Don’t even get me started about the inundation of artificial fragrances and bath/beauty/home products in North America creating a toxic environment. People don’t want to live in bubbles, but when the outside world is toxic, your options can be limited. Our home may be hypoallergenic and fragrance free, but we chose that long before it became a life-threatening need. Sometimes the process is arduous, expensive, and inconvenient or seemingly hopeless. But by choosing the person over a lifestyle and the things that make a lifestyle, we gain more than we “loose” in inconvenience, appearances, and expense. Our lifestyle may not be “sexy” or “glamorous” but it’s worthwhile and authentic.
  • A Person Isn’t a Tool: “You must remember to love people and use things, rather than to love things and use people.”- Venerable Fulton J. Sheen. A person isn’t a utility knife once rusty or broken you either repair or discard. Sometimes you can’t “repair” or “fix” a person, but you can suffer with a person (i.e., compassion.) Life with autoimmune disease or living with a person with an autoimmune disease isn’t easy and can be hard- the best type of hard. The lifestyle requires and demands mental/emotional/spiritual energy, staunch courage, creativity, perseverance in adversity, and loads of divine grace. Having a decent sense of humor and a level of abandonment in Christ helps too. But I found many people who struggle and suffer with an autoimmune disease have an immense capacity for joy and hope.
  • Learning About Yourself/Learning to Adapt: I went to dinner with my friend who is a Licensed Massage therapist and works with patients who have autoimmune diseases. She listened to my story (my family’s story and the difficulties we were facing.) She paused and stated, “You want to be frustrated with a person with an autoimmune disease when you can’t plan anything or commit to anything with certainty, but you can’t be. It isn’t their fault because no-one can predict how and why and what may happen hour by hour. And they are the one’s who suffer with this daily. How frustrating it must be for them.” She captured a rare truth. Living with a person suffering with an autoimmune disease is an exploration into one’s self (a mirror of sorts): your motivation, your priorities, your definition of commitment and relationships, your worldview, your sense of humor, your selfishness and selflessness, your compassion and empathy or the lack-there-of, your faith and the importance faith in your daily life, your humility, your pursuit of virtue versus vice, and whether you have the courage to live in the world but not conform to the world.

Thank you for reading and your support!

 

St. Lidwina, patron saint of chronic pain and chronic illness,  pray for us!

 

 

 

International Travel & Packing with Chronic Health Conditions

“Leaving on a Jet plane! . . .” Cue the excitement and the thrill of international travel. Regardless, of the reasons behind travel, whether domestic or international, the drive comes from an innate, human curiosity and capacity for learning and experiencing the “other. ”

What does travel look like for a person with chronic health conditions? Depends on the condition and circumstances. Certain conditions may even limit a person’s ability to travel. But I know my packing list and priorities differ from your typical travel blog.

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Points to Ponder:

1. Understand the region of the world you are interested in travelling to. Be realistic about your condition(s) and understand the potential risks of visiting an area where you will not have access to certain types or quality of medical care. God be with those that don’t have access to good medical care.

2.  Check with your health insurance company to see if your policy follows you to your travel destination. My past two policies did, but only certain facilities in the UK were covered. If not, weigh your need for a temporary, international health insurance policy.

3. For ease of mind, research how to access healthcare services in your destination country(ies). Most of the world operates on a different healthcare system then the US. The local Embassy website will outline how US Citizens can access different healthcare services within that specific country.

READY TO PACK?

1. Medications The General Rule of Thumb: Carry on your prescription medicine in the original package(s) with a Letter from your prescribing doctor outlining the medical necessity of your medications. Research medication travel guidelines by country you plan to visit. Most Embassy websites within your travel country will have info regarding travelling with prescription medication. If you have less than 3 months of medications, you typically don’t have to disclose to Customs  (varies by country). If you have over 3 months of medications, medications administered by injection or liquids, or medications that are “controlled substances,” assume you will need to disclose to Customs.

2. A Doctor’s Letter. Make sure to request a Letter outlining the medical necessity of your prescription medicine needs, list of prescription meds, and contact info for your prescribing physician at least a 1- 2 weeks before travel. Most doctors are responsive to patient requests, but your doctor could be out of the office. This way you aren’t stressed and scrambling at last moment. Having this letter will help with any Customs inquiries or if you needed any medical attention while travelling.

3. Daily Dosage. Depending on the quantity and shape of your medications, bring a pill case or Ziploc bags filled with your non-prescription medications. Once through Customs, you can easily transfer your daily dosage from the prescription packaging to a convenient and portable on-the-go system. For example, I take more non-prescription and prescription meds daily than can fit in any pill case. I use sandwich size Ziploc bags. Once through Customs, I add my prescription meds to my supplements and grab one bag per day. Do not discard the original medication packaging.

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4. Pack Extra. Pack more prescription medications than days you are actually traveling.  Don’t save space by packing fewer meds. Take another 1-2 weeks of meds for “just in case.”

5. Prone to Nausea. If you’re susceptible to stomach sickness, skip the airline barf bags and pack a couple quart to gallon Ziploc bags. Discreet and practical, these plastic bags allow for better control and ease of disposal. I have complicated migraines and sometimes struggle with nausea.

6. Research Handicap accessibility and guidelines at your intended travel destination. Check with your modes of transportation and lodging about handicap accessibility and accommodations. I do not need special accommodations for accessibility, but please, research for your particular needs.

Most importantly, HAVE FUN and ENJOY the experience of international travel! May God be with you on your next adventure.

St. Christopher, pray for us!