What to say to someone who just does not get it

How many times have you had to remind the same person about your disease? You know they have not forgotten about it, but they insist that they know all about it. I have been pretty lucky with the people around me. They either understand my illness, or they don’t, but trust I know what is best for me.  


My friends basically know how my disease effects me, and if they have a question they ask. I am more than open with them about it, since they are my friends and I work with a lot of them. I feel like people in my family understand it and just trust me and my decisions. 

However, what do you do and how much patience can you have with someone who questions you?  Recently, I am struggling with someone who insists that just because certain foods doesn’t not hurt there stomach, that it would not hurt mine.. I have explained many times and reminded this person that they do not have what I have. Even if this person had the disease themselves, no two diseases are alike.


You reach a certain point that the people who want to help and understand, will. The people that think they know best, I can no longer share this infomartion with. This not IBS, this is not a stomach ache, this is not having a sensitive stomach, this is a disease. The best way to support someone is showing them that you trust them and prove it by finding ways to show them that you are here for them. 

I love when my friends send me articles about my disease. It shows me that they have read something, thought of me and want to show me that they are trying to understand. Sending information like that, instead of presisting that you know best about my Ulcerative Colitis is a much better appraoch. Or even asking questions is a huge compliment in my book. My advice to anyone dealing with this, is stop tryig to make them understand. You may have to cut it short with them. If they see you as being rude, reinforce that it is rude to claim you know my disease better than I do. 


Do you have certain people in your life that just don’t get it?  

Having a support system

Everyone should have a support system, or have people they can talk to about there disease. Unfortunately, some of the people you may speak with can only understand to a certain extent. 

My fiancé lives with me, so he sees me take over twelve pills a day. He also witnesses me injecting a needle into my skin. He sees how easily fatigued I get, or irritable I can be. Not only that, but sometimes he is even lucky enough to go with me to my doctors appointments!

I probably deserved it
A few days after we got engaged (ignore the moon face)

I do tell my sister and father about my IBD and keep them up to date on what is going on with me. My mom makes food when I see her that I can eat, to get me some variety. I think they do a good job understanding what I am going through, but like most people I speak to about it you can hear in there voice the relief that it is not them, or, that they wish it was them instead.

My sister and I at Christmas

I also go to a support group every other month through the CCFA. I highly recommend it to anyone who is looking for a little more support. My fiancé and I go together and it has been very helpful. It can be comical and it can also be sad, or even inspiring.

We don’t sit in a circle and complain talking about how many bathroom trips we take. (Though it is mentioned)! We talk about medicine we have tried, side effects, embarrassing moments, daily challenges, break downs, foods, symptoms, and anything else we have on our minds. It is helpful to see people going through the same challenges you are. We try to help each other out and also give awareness to our disease.


If you have a support system through your family, or support group, or both; it is important to have one. Keeping everything in makes it harder to cope with and stress is not good for people with IBD!

Who is your biggest supporter? Would you ever go to a support group? 

Taking back my life

Can anyone else agree with me that 2016 has been just a horrible year? Everyone I know, including myself has had a rough time. However, it seems that things look like they could be turning around finally. Since 2016 barged its way into my life, I have had nothing but horrible luck and the people around me.

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  • I was diagnosed with Ulcerative Colitis
  • I have been on prednisone since January and have gained 50lbs
  • I am still trying to find the right “cocktail” to manage my symptoms
  • My fiancé was in the hospital
  • My father was in the hospital
  • My sister moved away to Maine
  • My close co worker had to have surgery
  • My father’s girlfriend was diagnosed with a health condition and had to have a procedure done
  • I was in the hospital for nine days for pneumonia
  • My mother was in the hospital
  • There was a gas leak in my apartment
  • The family dog has not been doing so well lately (She is a 15 year old yellow lab)

I did not think that list would ever end and I am sure you thought that as well! Alright, so I have had some bad luck. Honestly, I have been trying to cope with it for a while. All of those events happened within a very short amount of time. After I got out of the hospital, I was pretty down. They took away my Humira, until they had conformation that my recent diagnosis, was not caused by it. I wasn’t sure how long the Humira was going to last in my system, before I would start to feel my symptoms return. I was going on a full month without it, I was terrified. I really feel that Humira is working for me, I just have to taper down off the steroids a little slower.

Recently, things started to look up. I got a X-ray done and everything was clear. I had two more doctor appointments and a CT scan. Everything was coming back clear and I finally received the permission to go BACK ON HUMIRA! I had never been so excited to inject a needle in my skin, until that moment. After speaking to the Humira nurse, she wanted to know everything about my recent hospital stay. She stated they must document every time I get sick. She also explained to me once again (like I did not already know), that I can not fight infections. Okay, okay.. I know.. I did not mean to get sick.. If someone is sick around me with a seasonal cold, that could be my pneumonia. Especially with me working in geriatric care, my residents are constantly sick. So I just have to be even more cautious and realize that with a autoimmune disease, my body can not fight.

In my last post I also mentioned starting this new program to assist me in loosing my prednisone weight, and then some. So far, the diet has been challenging. I have lost six pounds in three days. Not bad! I am just happy my dear friend, prednisone, is allowing it!

My father also recently received an offer on his house that had been on the market for a while. It is not sold just yet, but the offer was made and approved now it they just have to finalize a few things and it will be done with.

So, these may not seem like a big deal to most. To me, I thought this year would never turn around. I am excited to say that the possibility is there to have a good rest of the year.

Did you ever feel like nothing was going right? How long did it last? What did you do to stay positive?

My new “normal”

Since January 19, 2016, my life has drastically changed. I guess I can say I have really gotten to know myself better in these few short months. This is due to constant stress and my limits being tested.

Now, I know it as my new normal. My new normal consists of waking up three hours before I have to be somewhere so I have enough time to get sick. Not only to get sick, but to find the strength to get ready. Many people say ” But you look so good, you would never be able to tell what your going through”.  Little do they know, it took every last ounce of energy to get myself ready and dressed for the day.


My new normal also consists of taking over ten pills a day, a self injection every two weeks, and since my recent pneumonia diagnosis, two inhalers. Due to this, I pretty much carry a medicine cabinet in my purse.


I also have to be careful when I make plans for myself, or with other people. I may think I am invincible, but I am human with a chronic disease that makes me very tired. I do need my rest and have to make sure I get it all.

Unfortunately, my normal is counting how many bathroom trips I have to take. I also have to pretty much dissect food to make sure I can digest it all.

Also, I would stop reading this now if you don’t want to know the real IBD truth.. I have to sometimes take an extra pair of pants with me if it is a bad day for me and my UC.. It’s the sad shameful truth. Although, people with IBD are well aware of this issue and some people even where depends. Luckily, I have not gotten to that point yet.

Doctor appointments have also become a new routine for me. Between follow up appointments every few weeks and blood draws every two weeks it can get overwhelming.


To most, this is a living nightmare. I am still in shock and have to remind myself that this is my life. Some people have referred this to as a “hiccup”. This is not a “hiccup”. This is a nightmare that has turned into “my new normal”.

How long did it take you to accept your new life style? 

I am struggling, but I wont stand for it!

Since January 19th, 2016 I have been struggling in every way possible. I am struggling to cope with my disease. I am struggling to recognize myself in the mirror. I am struggling to feel well. I am struggling to get my disease under control. I am struggling to do normal things. I am struggling to have energy. I am struggling fighting infections. 

Not only am I struggling, but I am failing. I am failing to feel better. I am failing to loose weight, because of the steroids. I am failing to be happy. I am failing at getting things done. 

Even though I am struggling and in my mind, failing. I am not going to sit around anymore and let something else happen. I tried to work out again, but then I got pneumonia. I failed at that too. So, as of today I ordered my new diet plan. It has changed lives and I have known several woman who have done this and it has worked wonders! I don’t think I look that bad, but I want to feel better about myself again. 


I refuse to let this disease tear me down anymore than it has and I expect nothing than wonderful things from this new diet plan that I start next week. I am determined and I refuse to “fail”. 

How has your disease effected your life?