Here's a list of a few things I found to help cope along the way:
Lift it up and give it away
First and foremost and always, pray. I prayed a lot. Prayed for God to help me through, take it way, lead me down the path to health, show me what to do. Sometimes this is the only thing you have and don't ever let it go. Hold on to prayer as tight as you can and replace every worry, every fear, with words to God. Not that it's easy!
I really like what a pastor said once. It's not that God doesn't give you more than you can handle, only more than you can handle without Him. These are the times when it is most important to turn your life to Him even if you don't like what is happening or cannot see the path ahead.
Find a good doctor
This is whether you are first getting diagnosed and treated, or are farther down the road. My first doctor was the worst I have ever been to in my entire life. Going in, I thought I had something very minor. Coming out, he sent a 20-something nurse who knew very little to tell me I had a potentially serious lifelong disorder. Without ever speaking to me in person, he prescribed me 15 pills for the very next day, which I did not take. I also filed a complaint about him. How can I trust the care of a person who will not even take the time to speak to me?
Get a second opinion
Do not be afraid to ask questions and get a second opinion if you aren't satisfied. It is your right, though make sure how your insurance plan will handle it so there are no surprises. And before you do, ask around and do extensive research. After the bad experience I had, I talked to two friends whose spouses I was vaguely aware had similar disorders and also looked up doctors in larger cities.
I looked at credentials, feedback ratings and comments from patients, age, years in practice, specialty and what associations they were members of. I narrowed it to one, a lady doctor an hour away who is a member of both official national colitis organizations. Someone I know also goes to her. I love her. She took the time to talk to me and calm me down, discuss options and opened the door for me to call her office at any time. Her nurse has been so wonderful and even let me cry on the phone with her. Now that is what it feels like to be cared for by a physician.
Even when it's hard, find gratitude
Find something, anything, to be grateful for. Again, my symptoms and future are not near what some people struggle with and maybe that makes gratitude easier, but there were days I just wanted to cry and give up. I fought and fought to remember, at least it's not something worse. At least my symptoms aren't as bad as they could be. At least I slept good last night. At least I have my husband to support me. At least I'm not alone. At least I have health insurance. In the worst moments, after I prayed, I cast around my mind until I could snag something to be grateful for.
Tell your spouse
There were times I wanted to hide how I was feeling both physically and emotionally. No one wants to moan and groan all the time. I wanted to be strong. But I always broke down and told him just what I felt. Not only does it help them understand what you're going through, it also helps them support you and gives you a sounding board for what to do next.
Tell your kids
Of course I didn't go into detail with Brady and you don't want to scare them, but I found myself on several occasions having a very short fuse. I felt bad. I felt tired. I felt discouraged. And I would snap at him. So I told him, honey, if I'm a little extra grumpy, I'm sorry. I just don't feel very good today. It helped him to understand and me to understand too.
Don't be ashamed
Clearly, I don't care who knows about my situation because I believe there's nothing to be ashamed about. Not only that, maybe someone else going through it will realize they're not alone. But even if you aren't an open book and decide to keep it quiet, don't ever be ashamed of your struggles and just make sure there's someone or a few someones you can confide in. Suffering in silence is so very lonely.
Lots of people have health issues. It's just a fact of life. We can't help that it's a part of who we are now and it is no reflection on who we are as people. And I really believe that sharing our struggles in this life makes them more bearable. A health problem is not a blight. It doesn't mean you're weak or tainted or bad. It simply is a part of life. Accept yourself for how you are now and love yourself just as much.
Ask for what you need
If you need help with chores around the house, ask for it. If you need a break, take it. If you need a nap, take that too. Listen to your body and don't push it farther than it can go and let others help you. Treat yourself well and stay as healthy as possible in all other areas of your life.
Have patience with your loved ones
They are all worried about you. They want to help, they want to offer advice, they want to encourage you to get help and not later, but NOW! A couple of times I got angry about that, mostly because I felt like it was me living this and it was up to me to figure it out and I knew best. But anything they say or do is out of love and care and concern. That in itself is a blessing and something to be grateful for.
Research, but carefully
Google can be good and bad. You can research expected symptoms and treatments, home remedies, what has worked for other people. But be careful or you risk scaring yourself . Make sure you only get information from reputable health sites like WebMD, Mayo Clinic, CDC, National Institutes of Health or an agency specific to your disorder, in my case that's the Crohn's and Colitis Foundation of America. Messageboards where people experiencing the disorder post can also be helpful to get ideas and support.
If you can, get group support
Whenever I have a problem - postpartum depression, divorce - I seek out a support group. I absolutely love them. The understanding and help you get from others with your exact specific experience is amazing. But unfortunately there are no support groups in my area for what I have. But there were several online. If you are in the midst of feeling bad or if you are the family member of someone struggling, a support group can be a kind of lifeline.
Do whatever you have to do to distract yourself and keep from sitting around moping. It is so easy to get caught in a thought loop about what you are going through and wallowing in it and then feeling worse all around. I was so very happy gardening season came upon us so I had something else to focus on. Keep as active as you can physically and also mentally. Read, write, cook, craft, plan projects, spend time with friends, make a goal and work toward it. Get outside. Fresh air and sunshine always help. If you can keep moving physically, do that too even if it is just a little at a time.
Take it one day at a time
This is a very hard lesson I've had to learn over and over in life. Just get through today. Tomorrow will attend to itself. When you learn you have a lifelong illness that will likely recur again and again, and may cause more problems years from now, it is so easy to get overwhelmed. But just get through today. Do what you need to do to get in the best health possible. Pray all along the way. Celebrate the smallest successes every day. And just get through the moment, the hour, the day.
You don't know what the future holds. You cannot know. So there is very little use in worrying about it. That's easier said than done, but things will be so much better for it if you can do it.
Loved ones, remember ...
Just because the person you love may look okay in one moment, they may not be feeling okay underneath. It's possible for them to seem like everything's normal for awhile. Check in with them often, see what it is they need. They may be trying to put on a strong front and just need that nudge and that assurance of your support. It's tough to say, hey, I have a problem and things are different. But struggling all alone is one of the worst things in the world. Stick with them and by them and hug them a lot.
Be honest with them. Give them advice. But also listen very closely to what they are saying and give them the freedom, space and power to decide their fate. In times like these, a person wants to maintain a measure of control over their own life when so many other things seem out of their control.
If you have to, take medicine
Oh boy, I did NOT want to do this. I hate taking medicine. I've hardly ever taken long-term medicine and when I did, I always got off just as soon as I could. I tried hard to kick this without meds and the wonderful doctor I found gave me the freedom to do that. She let me try lesser alternatives and she did not try to push me.
And when I finally decided all on my own it was something I needed to try, her wonderful nurse found me the least expensive alternative ($380 + insurance + prescription card = $100 per month out of pocket as opposed to $600 + insurance = $290 per month from the original bad doctor). And they put me on half the number of pills as the other guy.
I don't know if I'll have to always take it. I may be able to be off of it for periods of time, but if I do I am happy to report that it has worked great. Gosh, what did people do 100 years ago with this? Just suffered, I guess. I finally feel good and normal again. That is truly a blessing. Thank you, God.