A Guide for Those With Special Needs/Conditions (And Their Loved Ones)

Just the other day I sat in a training meeting, which is a normal weekly occurrence. Each week this group of people get trained on important tasks to do to help the people we serve have good experiences. They are really uplifting meetings. This specific meeting has made a huge impact on me and my life. It was all about people with special needs and how to help them have the best experience possible. It was shared that sometimes a special need or a disability cannot be seen, but it is still there.

Gastroparesis is one of those conditions that you can have without people knowing that anything is wrong, even though some days it is very difficult to show that nothing is wrong. It is not easy dealing with these conditions. Some times you want to keep it hidden to keep life normal, when in reality you feel like you should wear a sign that explains it, in order to avoid the awkwardness that follows when people find out about your condition.

There have been many times when I have been out doing something with a group and then food is brought in to the equation. I remember one time in particular, a group of friends and I were playing broom hockey in a parking lot. It was a lot of fun and everyone was having a good time. Then a plate of fruit was brought out. It had fruits I could not eat (apples, oranges, pineapple, grapes). As everyone dug in, someone asked me if I was going to eat. I politely said no and tried to let it blow over. However, the pressing continued. "Don't you like fruit? Why aren't you eating it?" The basic "I can't" answer didn't seem to satisfy one of them. He continued "Why can't you?" I explained the gastroparesis. He asked lots of questions from "What can you eat?" to "What can't you eat?" and others. In the end, he said "I could never date you because I couldn't cook for you." Ouch!

Honestly, this guy had shown interest (though I really didn't have much). The fact that an unseen condition changed his mind so abruptly was shocking and I had no clue how to respond. I ended up something like "Being friends is fine with me" or "I'm okay with that". It hurt. That's when I realized people do treat you different when you have a "special need", even though everything within you desires to be treated normal, whatever normal means.

Those with special needs or conditions that cannot be seen truly desire to live a normal life, or as normal as possible. Sometimes this requires the help and support of others. Here are some ways that others can help those dealing with these things:

1. Help them feel comfortable. They are already dealing with the stresses that come with having said trials. Not fitting in or being discriminated against makes life a little harder. Find things to do in which they can participate fully. They will feel comfortable being around you and doing these activities, which will help them to develop a sense of self and be comfortable doing so.

2. Accept them for who they are. What helps is being around people who accept you for you, no questions asked. Help them to see that they are wonderful the way they are and that they are important to you. If you find out someone has a condition, and a friendship has already been established, don't let the confession change what you think of them. You got to know the real person first, and that doesn't change by knowing that they suffer from whatever it is they have.

3. Don't draw unnecessary attention to the condition. More often than not, having attention drawn to these weakness makes it harder for them to cope. The more people who know, the weaker they feel. For instance, if someone with gastroparesis showed up at a party, don't make a huge production over finding them something that they can eat. You can pull them aside and ask them if there is anything that they can eat or if they can eat anything. This will make it so they don't have to explain the "why" to everyone and feel more comfortable just being them.

4. Offer to help, even if it just listening. People with these needs and conditions don't always have "gold-star days". They will have down days of discouragement. Having someone they know they can talk to makes all the difference. Listen to what they say and let them freely share the emotions that come. You can respond with encouragement, a message of hope, or maybe even a joke. Just knowing that someone is willing to help them through the hard times, makes a big difference.

Let me say a word or two about what those with these conditions can to in order to avoid painful and awkward situations where they are judged solely on their condition or disability. Some of the greatest people I know are those who have disabilities or special needs, but don't those needs get them down. They find joy in their life and feed off of that. Here would be my guide:

1. Find joy and happiness in life everyday, even when it seems like nothing good has happened. You survived the day and that is something great! If this is difficult for you to see, write it down. I have taken to the practice of writing two things down everyday that made me happy or helped me to grow. As I have reviewed those, a smile comes to my face and I see what a great life I am living.

2. Accept what you have. This is not always an easy task. I was diagnosed in 2006 and have struggled that past 7 years coping with the fact that my stomach is not working and could never work again. In the beginning, I would try to hide the condition and avoid talking about it to other people. I thought what they didn't know wouldn't hurt. I was a little ashamed that I had this "disability" so to speak (though I really don't consider it a disability, but more of a condition). Once I accepted that this condition was going to be a part of my everyday life, I was no longer scared to tell people about my condition. It was a freeing feeling.

3. Advice and help show that people care. We've all been there. People try to give us advice on how to make things better. I remember one night, after getting sick because of my gastroparesis, a roommate sat me down and decided to have a talk with me. She was convinced that I had an eating disorder or that the diet that I was surviving off of, was not healthy. She continued by giving me all sorts of advice on what to eat (nothing that I really could eat) and how to prevent the sick episodes from coming on. All I wanted to do was cry and sleep. It was 1 a.m., after all. The next day, as I thought about it, I understood that she had done that because she cared and because she wanted to help me. Though her advice would not have helped the situation, she showed her concern because she wanted the best for me.

4. Don't play the victim.  Most of us know someone or have met someone who thinks the whole world is against them and that nothing good is every going to come from life. They are constantly discouraged and distressed because life has handed them lots of lemons. Instead of making something with those lemons, they let them sit and gather, creating a big pile of sourness. Yes, having a disability, condition or special need is not an easy thing. Yes, it does feel like a lemon has been handed to you. What you do with that lemon is up to you. You could make it into a pie, a drink, a desert, a seasoning or marinade for a meal, use it as a cleaner, or add flavor to another dish. Your hardship is hard, but make it a positive by latching to the good you find and creating something better.

5. Be true to yourself. Dealing with chronic or difficult conditions, changes you. This is a time for you to define who you really are and by true to that person. I'm a happy person, even though I have rough days. One of my discoveries is that I can be happy even when I struggle, because it makes my struggles seem a little less difficult and a little more manageable. Establish you sense of being and live up to that. You get to decide who you are. You are an amazing person with incredible potential. It is up to you to live up to that potential and become the best you possible. 

It's not easy dealing with these conditions, especially when, on the outside, you appear to be a normal, healthy human being. We all want to feel wanted and don't want to be made uncomfortable. One thing
 I say a lot is that our conditions do not define us, but they make us who we are. My unseen issues are real and they make me fearful to do things that would otherwise be common. That fear is real. However, that fear is not paralyzing, especially with the help and love of those around me who accept me for me and help me to live the most normal life possible.

Making life the best experience possible depends on the person going through the trial for sure. It also depends on the love and support that they receive from those around them, be it family, friends, acquaintances, or even strangers on the street. Together we can all make people with special needs feel happy and comfortable, as well as make life easier for everyone who goes through any type of struggle.

Food and The Holidays

For the past couple of years, I have struggled with wanting to go home or celebrate some of the holidays (especially Thanksgiving) because of the strong emphasis on food. Don't get me wrong, I love food, but it is no fun when you have a condition that limits what you can and can't eat, and the amounts that you can eat. This year, it has hit me how much the holidays revolve around food. That makes it difficult for those of us who struggle constantly with these food-related issues.

The question is, how can those with food-related conditions cope with the stress that comes around the holidays? Studies have shown that the holidays can be difficult on people, and usually bring stress and depression, which is real. For me, not being able to participate fully brings on these symptoms. I don't have the answer on this one, though I wish I did. The holidays still are one of those times that are hard for me to manage my stomach condition, which makes me discouraged. I want to change that this year, so I've done some research.

There is a plethora or information out there on how to deal with depression and stress during the holidays (like the link below from the Mayo Clinic).

http://www.mayoclinic.com/health/stress/MH00030

On the website for the IFFGD (International Foundation for Functional Gastrointestinal Disorder) there are some tips to help with acid reflux and other issues, with GI issues. http://www.iffgd.org/site/manage-your-health/holidays/

Below are the tips that they give for healthy thinking during the holidays for people with IBS. Even though IBS is not my condition, these tips are still applicable.

Healthy Thinking During the Holidays

Barbara Bradley Bolen offers a number of detailed suggestions for reducing the impact of IBS during the holidays.
     Practice active self care: Practicing these new skills will help you to keep your focus on your own well-being rather than just being caught up with all of the myriad tasks that this time of year seems to require:

• Plan ahead
• Practice relaxation exercises
• Practice kind and gentle feeding
• Tell the caring people in your life about your IBS
• Speak up about any special needs you have
• Take steps to protect yourself from critical people.

Earlier this week, I took some of this advice and talked with my mom about how I was feeling. A lot of the time, people don't know what you are thinking unless you tell them. As we talked about my concerns and my feelings, it was eye-opening. I always felt like an inconvenience and annoyance because I tend to complain and be a bummer to be around. We talked through some of the issues that I had and why I wasn't wanting to deal with Thanksgiving. It was a good conversation. 

I had created my own list of ways to cope. Most of those are on the list above. One I would add would be to get outside and get some fresh air and natural light. This could be hard if it is cold. Believe me, I'm from Idaho, I know. It could be as much as sitting outside for 5 minutes or taking a walk or even a friendly game of football, depending on the weather of course. Another tip I would give would be to find ways to make the holidays less about the food and more about the company. How? Maybe give yourself a project that is not food related. Perhaps you could volunteer to be the kid watcher. You could take on the task of decorating. Do something that gets you out of kitchen but still able to help.

It's hard to describe what it feels like to have a food related condition. The best way I have figured, is that it is similar to being pregnant. In fact, I listen to the symptoms of family and friends as they go through pregnancy and I completely understand how they feel, even though it seems a bit odd. The smells make your stomach churn. You have to eat every couple hours, even though you have little to no appetite. You have very little energy. There is even some pain and discomfort involved.

I would love to hear any other tips or feedback you have on the holidays and food. I'm not an expert on this issue, but would love to learn about how to better deal and cope with food and the holidays. Suggestions, tips, stories, and more would be helpful.

Happy Holiday Season My Friends!