There are a lot of times someone with IBD might be laid up in bed because of a flare, recouping from surgery or a number of other reasons.
How many times have you heard the question “Is there anything I can do for you?” and didn’t know the answer?
I’ve got a few tips on how to handle situations that might be a tad uncomfortable, especially when you don’t know what to say. Sometimes when you don’t know what to say, you’re left with a feeling of guilt that you’re expected to have the answer to that question! Sometimes you just don’t know.
Many of us don’t always talk about how our illness affects us. Many times, ignorance can be bliss – if we ignore the symptoms, maybe they’re not really there, right?? Wrong. There will come a time when you cannot ignore those symptoms anymore and you must seek help from your gastroenterologist.
Just like seeking help from any of your care providers, it’s important to seek and accept the help of others.
And let’s get one thing clear about this before I go on – I am the biggest hypocrite when it comes to this, because I don’t let people help me enough. My usual answer is “No, I’ll be alright, but thanks.” Within the last few years, I can tell when people are being sincere and when people are just trying to get out of an uncomfortable situation. I can read that pretty well. But the people who are sincere, really care and want to help – we should let them.
Not a lot of caregivers truly understand the depths of what ulcerative colitis or Crohn’s disease can do to a person’s body, emotions or mental state. I’ve not given up on trying to educate them, but when you’re ill and you barely have the energy to get words out, it takes a lot of patience. When you’re sick, you lack patience.
Like I said, I don’t accept help in the way I should because I’m a bit hard-headed and like to deal with my disease, along with its symptoms, privately. I talk about them a lot when I write, but when it comes to personal conversations, I never want to be the person that complains, whines or harps on their disease. I want to be seen for me and putting my guard down and accepting help can be hard when you have a lot of pride and are very independent.
My loved ones and support team have done some pretty special things for me in the past.
Not all people know what to do when a loved one is ill and they shouldn’t be expected to know. There comes a certain point in your disease where you have to make an effort to let others know how they can support you. This could be at work, for instance, asking for work that might be a little easier for you on days you’re flaring. If your coworkers know there’s something going on, they may want to help but they may not be sure what’s appropriate to ask, suggest or offer. Don’t be offended. I’ve been blessed with great coworkers, but they also know that I like to keep my personal life separate from work.
This is one of the reasons I began writing my blog, so that others could use this as a resource to know “what to do” vs. “what not to do.” I’ve written several blogs on “what TO say to someone who has IBD” instead of the typical “What not to say to someone with Crohn’s or colitis.” I feel like this has helped set some boundaries, and when someone brings it up, I keep conversation very short and tell them we can talk at the end of the day. I don’t want them to feel as if I’ve brushed them off, but there is also a place and a time for sensitive things.
My family has also done some pretty stellar things for me.
My mom has gone out of her way multiple times when I’m ill to come over, tell me to go lay down and clean my entire house from top to bottom. Everyone going through a serious illness can attest to how dirty and collected things can get when you’re sick. My mother has been a saint during those times and has made sure my environment is as clean and sanitary as possible when I have not had the strength or ability to do so.
Another thing my mom has offered to do in the past is shampoo my hair. Because my arthritis gets so bad (even at the moment), there are times my hands become so swollen and painful that the thought of taking a shower makes me cry. I know that I am unable to wash my hair by myself, so she has done it multiple times for me. These little things become very big things when offered to people who are going through something physically traumatic.
And then there are friends.
How the heck do you explain to someone you can’t do something because you’re not feeling well?
How do you say no when you could be risking that friendship? Will they stop calling? Checking in? I suggest explaining through a text or an email that sometimes, when you’re at your weakest, it’s hard for you to be seen in that state. Just. Be. Honest. It truly goes a long way and the people that are strong and want to stay – will.
I’ve had great friends just send a text telling me “I’m just going to stop over and drop something off – I won’t stay, I want you to rest! And I won’t take no for an answer!” It is SO good to see those people, even for a split second. To know that they understand what I need, because I’ve been honest with them by setting boundaries makes me feel like a better friend than saying nothing at all. My friends and loved ones begin to understand that “Not today” doesn’t mean “Never” as long as I give them enough line for some slack. Even though my patience and energy may be thin, I have to recognize the importance of being honest and verbally giving them reasons why you need lines drawn in the sand sometimes when you’re not feeling well.
I have to thank my friends who suggested (very strongly) that I make an Amazon Wishlist when I became unemployed and couldn’t afford much of anything while waiting on assistance from the Government short-term. Without them, I’m not sure I’d be where I am and I am so grateful that it was strongly suggested I make a list, because people want to help! That was hard – putting my pride aside and letting people know what I needed in order to get by.
Really what you need to let others know is your definition of “support.”
What does it mean for you? Have kids? If someone texts you and offers to bring something by, perhaps tell them, “I’m not feeling up to it yet, but since you offered, do you mind taking my child to the store with you so it’s a bit quieter around here?” Or maybe you have a dog that might need walking. People want to help. It’s just up to us to accept it.