Travel Tuesday – Traveling With A Disease

Today I want you to meet Constance Collins, The Travel Ninja of the week. She’s a fascinating traveler dealing with lupus. Please read how she deals with her condition and her desire to travel.

1. How old are you and how long have you been dealing with Lupus? 

•  I am 25 years old and I have been dealing with Lupus for 7 years. I was diagnosed with Lupus when I was a freshman in college.

 

2.You are focused on living your best life. How did your Lupus diagnosis affect your desire and ability to travel? 

•  I have always been interested in traveling. As a child, I traveled a lot with my family so I have always had the desire to get away and explore new places. I knew when I was a freshman in high school that I wanted to go far away for college and I used to dream of traveling to exotic locations. When I was diagnosed with Lupus, I was 18 and free-spirited so being diagnosed with Lupus just felt like something I had to deal with while I chased the things I really wanted, which was boys and travel. I really just took it in stride and never let it stop me from doing the things I wanted. I stayed in school, to the dismay of some of my family members and I even went to Paris for a study abroad program five months after I was diagnosed. Once I started getting sicker, it made me crave travel even more because I just needed to get away sometimes. Staying stagnant makes me uncomfortable, being sick and stagnant is torture.

 

3. Where have you traveled since being diagnosed? 

In the summer of 2013, I did a solo backpacking trip through various cities in France, Switzerland, Italy, Germany, the Netherlands, Belgium, and Spain. Then I traveled to South Africa for the World Transplant Games in Durban. It’s like the Olympics for people who have organ transplants. It was such an awesome experience worthy of a post of its own. I have also traveled to Canada and I had a layover in Russia twice, does that count?

 

4. What do you have to do differently when you travel now that you deal with a chronic illness? 

During my senior year of college, I was on peritoneal dialysis for my kidney failure that was caused by the Lupus. The type of dialysis I was on required me to hook up to a 40-pound dialyzing machine at home nightly for 9 hours and I used two 2-liter bags of fluid per night that circulated through my peritoneal cavity to remove waste. I had a catheter in my abdomen and I was not allowed to carry items that were more than 25 pounds to avoid getting a hernia.

My friend, Jamel, worked for AirTran and had given me his companion pass that year which granted free travel to any destination serviced by the airline. So that year, I was traveling a lot on weekends and during school breaks so I had to be very strategic about how I traveled. I had to call Baxter, the company that provided my dialysis fluid, so they could deliver enough fluid for the duration of my stay to my destination. When in the airport, I always requested a wheelchair so that I would not have to carry my machine through the airport. I had to carry the machine on the plane with me because it belonged to the dialysis company and if lost or damaged, I would be responsible for thousands of dollars for repair or replacement. I had to get a special note from my doctors that specified this. Since I was a standby passenger, I was usually cleared right before take-off and there was no room for my machine on the flight so the flight attendants would try to check it which I would not allow to happen under any circumstance, so that created problems at times. I usually got some stares in the airport when my 21-year old, healthy looking self whizzed past the security lines in the handicap lane, but it never bothered me.

I had a kidney transplant in 2011 and now my main focus when traveling is making sure I carry all of my anti-rejection and pain medications with me onboard. I always reserve the window seat so that I can rest during flights. While I am in a new place, I just listen to my body. I try not to do more than I can. The adrenaline I get from traveling usually carries me through my trips.

5. You have described Lupus as an “invisible disease’. What do you mean by that? 

Lupus affects different people in different ways and in my case, it is systemic meaning it has only affected my kidneys, heart, and joints. It causes severe pain and chronic fatigue, but on the surface, many people who are affected by this disorder look perfectly healthy. This can be both positive and have some drawbacks. Let’s focus on the positive first. When I look healthy, I feel healthy. In the summer of 2009, I gained 40 pounds of water weight in the course of 1-week and I looked so unhealthy. When I looked at myself, I was unrecognizable. When others saw me, I felt insecure because they either commented on my new look or I felt like they were judging my appearance. I looked unhealthy and it was apparent to everyone and I could not get used to it, especially since it happened so fast. I am very happy that I returned back to normal within a year, save for stretch marks all over my body. I feel relieved and sometimes I can fake it until I make it.

Now for the negative, having an invisible disease makes it hard for others to relate and understand what you are dealing with. Some people have their own ideas of what you are supposed to look like and what you should be doing when you are not feeling well. This made my past job a struggle sometimes. I felt mostly supported at my job, but there were times when I just did not feel well and I could not fake it, and there were things said about me that were not very kind. I always wonder if when I wasn’t feeling well and I appeared outwardly how I felt inwardly if I would have been described by those same terms. I even had a situation where someone reported my activity on social networks to my superiors when I was in the hospital. I can’t imagine something like that happening to someone who has a more well-known disease such as cancer or an ailment that leaves a physical impression. That situation actually really scarred me because it validated one of my worries: that people may not believe that I’m sick because they can’t see it.

Also, when I feel sick, sometimes it is even hard for me to come to terms with it. Like I said before, when I look healthy, I feel healthy, so when I feel crappy but still look awesome, I sometimes feel a sense of guilt when I need to call out from work or bail on plans I make with other people. Sometimes, I overexert myself because of this. One moment I can feel perfectly fine and the next moment can be hell. It’s very strange and I wish I knew how to reconcile this because it is so difficult. I try to connect with other people who deal with lupus and kidney disease, but so many people who deal with this are either much older than me or aren’t working full-time, demanding jobs so I find it hard to understand the best ways of dealing with this. I’m slowly but surely getting to the point where I realize I don’t need to PROVE that I’m sick to anyone and allow myself to feel the way I feel with no guilt or regret whatsoever. I’m getting there.

6. When you travel, how do you deal with chronic fatigue and pain? 

When I travel, I am able to do as much or as little as I’d like to. When I feel tired, I can rest and take it easy. I usually try to get a caffeinated drink because traveling for me isn’t really about sitting around, not by a beach, not in a fancy hotel. I like to be out and exploring so I rest as much as possible and get out when I can. I always have pain medication when I am traveling, especially since I like to walk around a lot. I usually find nice places to sit, like a café or park, when my knees are unable to bear my weight any longer. I always purchase travel insurance when I travel for extra protection.

 

7. How is travel therapy for you? 

 Travel is therapeutic in so many different ways! My mental, emotional, spiritual, and physical health is all connected. When I am traveling to new places, I feel free. I usually travel alone and I am able to do whatever I want, when I want, with who I want and that’s exciting. I get to make my dreams a reality and be at peace with myself. I enjoy solitude and introspection and I also enjoy meeting new people; when I travel, I can combine the two. I truly believe the happiness and peace that I get from traveling contributes to my physical health. When I am happier, I have more energy and I make better choices for my body. I can exercise regularly and I chose better food for myself. Everyone has something that makes them feel alive, traveling and connecting with the world is my way of doing that.

 

 8. Have you ever had any flare ups or setbacks with your illness while traveling? If so how did you deal with it? 

I’ve never had a flare up while traveling but I have had a flare up right before a trip to South Africa and I had to cancel the trip. I was going to study abroad in South Africa and Swaziland in the summer of 2009 and about a week before my trip, I had an abscess on my leg and I went to the doctor to have it drained. While at the hospital, they found something else wrong with me, I can’t even remember what it was, but it kept me in the hospital for a few days. My mom came to be with me during that time and the doctors suggested that I don’t go to South Africa, so I didn’t. I was devastated. I probably should have just gone anyway.

9. What are a few things you want people to know about Lupus? 

I don’t have anything specific to Lupus. I would like people to be more understanding of others’ situations. And if you don’t have anything nice to say, shut up.

10. If anyone is reading this who has lupus and is afraid to travel, what do you want to tell them? 

I would urge anyone, regardless of age or ability, who has Lupus to travel and don’t wait on anyone else to do it! Be kind to yourself and treat yourself to a vacation, even if it is just for a weekend. We can’t let sickness stop us from living the life that we want. If you want to travel, DO IT! You will surprise yourself. Lupus is not a death sentence, it only becomes one when you stop living and you let your pain destroy you. This goes for people on dialysis as well, probably even more so for those people on dialysis because there is more of a physical restriction attached to dialysis. Don’t be afraid to travel. Listen to your body. Trust that things will work out. And if you are afraid to travel and need a travel buddy who understands your illness and your limitations, just buy my plane ticket and hotel, and I will go with you.

 

 

What did you think of her answers? Do you know anyone who has Lupus? Could this post be helpful to them?