There it was in Jacquita’s handwriting, almost leaping off the page to get my attention. I could feel my heart beating out of my chest and the hairs on the back of my neck standing at full attention. I immediately wrote down 1 Peter 5:10 in several different places to remind me to keep the faith while enduring all of this pain and fatigue. For a lot of us when chronic illness hits, people are there for you in the beginning but typically they don’t stick around for long. Not only was I struggling to do basic everyday tasks, I struggled to work even one day a week. It was a stressful job and although the majority of my coworkers were wonderful, there were a few who typically had negative comments regarding my health. I heard things like,” You’re so lucky, I wish I could work only one day a week” or “you were diagnosed with inter-what? I thought you just had endometriosis, geez how many health conditions do you have?” I also had to deal with people trying to give me unsolicited parenting advice whether it was from clients or coworkers that meant well but were unaware of how insensitive their comments were at the time. I tried to educate them as best as I could but sometimes you have to look at someone and say, “You realize you’re jealous of someone who is battling two chronic diseases right? Believe me I’d rather be able to work full time.” I think what is harder than hearing that stuff from people you work with is hearing that you have family members who question the legitimacy of your illnesses.
I’m preaching to the choir when it comes to the chronic illness community because so many people have experienced doubt or unbelief from their family, friends, co-workers, acquaintances, etc. It was implied that I’m a burden on my husband because I can’t work and am unable to make dinner or clean the house regularly. I’m sure it was brought up that this might not be real since these illnesses are invisible – I feel this way because I’ve heard a conversation where someone else in the family was questioned with their chronic invisible illness when they were not around. I should have said something when I heard that being said about that person but I was in utter shock that it was even being said. I understand that it is hard to comprehend the instability of it all when one day you see me smiling, laughing, and having a good time at a get together and then the next day I cancel on an event because I’m unable to get out of bed. However, it doesn’t excuse the total lack of empathy and insight I’m describing with these individuals. You really learn the truth about people you once respected when chronic illness hits and it forces you to see who people really are when you’re at your weakest. I was trying to deal with all of that nonsense while fighting for answers on this disease and it was beginning to weigh me down. I will say that I had wonderful support from other family members but hearing the constant negativity from the select few was hard to tune out. It started to feel like this raging storm wasn’t going to let up anytime soon and the proverbial streets were beginning to flood.
Micah and I were a great support to one another and scripture really helped in these difficult times. Unfortunately, we still weren’t able to go back to church just yet so we were still alone in this. Spending time with close friends didn’t happen often because of schedule conflicts and random disease flare ups so although I did have friends that truly cared and were there for me, I felt like I really needed more emotional support from other women with these diseases and began joining online support groups. By this time, the leaves were changing on the trees and we were heading into October.
Admittedly, it was difficult to read the posts in those support groups because it just seemed like everyone was suffering with no end in sight. Amongst the sad stories, I read a couple of posts that talked about a certain Facebook group that everyone should join in order to find a specialist but I wasn’t convinced that it was legit or any different from other support groups at that time. I quickly forgot about those posts and noticed that a high number of women really weren’t interested or were scared of even thinking a specialist could help them. They were afraid of hope. They had experienced their hopes of proper treatment and getting their lives back being completely destroyed; their identity had become these diseases. It’s not their fault that this has happened to them and we all fall into despair at some point with these diseases unfortunately. After reading the constant negativity and despair, I realized it was starting to weigh heavily on me, which told me I needed to take a break from the groups. I didn’t want to become like those women who refused to seek treatment from a specialist but I didn’t want to see a specialist if I was wrong about the disease still being there. We had already spent $10,000 on the previous surgery, pelvic floor physical therapy, tools to help PFD like theracanes, yoga mats, massage sticks, etc. With all our savings being spent on various treatments, I knew we probably couldn’t afford to see a specialist. That’s what usually stops people from seeking an endo specialist, even after they find out endo most likely will not return after proper treatment. If the misinformation doesn’t get in someone’s way for treatment, the money usually stops them. I just couldn’t understand how the medical community could fail all of these women and children and make little effort to find a cure or viable treatment options. It was a lot to take in and I really needed to step back and tune into what the Holy Spirit was saying.
I began to wonder, where was God in all of this suffering? That’s a question that I had to really unpack with scripture and the Holy Spirit. Well, there are tons of scriptures on suffering, enduring, hope, and healing that I needed to read and re-read. Where do I even start? Obviously there are the gospels that really depict Christ’s suffering as well as other stories of suffering in the Old Testament. However, I wasn’t as familiar with other scripture on healing and persevering through trails and tribulation in the New Testament so I started in James. If ever you don’t know where to start when you’re searching for scripture on suffering, I suggest starting with the book of James. I have referenced this scripture before but it bears repeating. Man, that’s a hard book to swallow when you’re in the middle of endo, IC, and PFD flares but a good reminder that we don’t suffer alone. Right out of the gate in the first book of James we’re told to rejoice in our sufferings.
”Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything. If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you. But when you ask, you must believe and not doubt, because the one who doubts is like a wave of the sea, blown and tossed by the wind. That person should not expect to receive anything from the Lord. Such a person is double-minded and unstable in all they do.” James 1: 2-7
Wow, that is rough but important to understand about this life. We are promised salvation but we are not promised a stress free and simple life. We are told in James that we should consider it a good thing if we are experiencing hardships because it will strengthen our faith and endurance/ perseverance/steadfastness to endure future trials. Something I noticed in all of the different versions of this scripture is the interchangeable use of endurance, perseverance, and steadfastness. I looked up the definitions of each word and wrote them down so I can easily reference them if needed. The definitions of all three words are as follows:
- Endurance: the fact or power of enduring an unpleasant or difficult process or situation without giving way; otherwise demands great physical stamina; the ability to withstand hardship or adversity
- Perseverance: persistence in doing something despite difficulty or delay in achieving success.
- Steadfastness: the quality of being resolutely or dutifully firm and unwavering; firmly fixed in place; immovable; not subject to change; firm in belief; determination, or adherence; loyal.
Lets go on to look at verse 12:
“Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him.” James 1:12
I seriously suggest reading the rest of that book if those scriptures speak to you as you suffer. I went on to read in Romans suffering is not in vain and actually teaches us to learn how to hope while we wait on God. It is in fact promised that we can have peace with God through faith no matter our circumstances. These are some scriptures from Romans and again I encourage you to read the entire book for encouragement:
“Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ. Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.” Romans 5:1-5
“For whatever was written in earlier times was written for our instruction, so that through endurance and the encouragement of the Scriptures we might have hope and overflow with confidence in His promises.” Romans 15:4
“May the God of hope fill you with all joy and peace in believing [through the experience of your faith] that by the power of the Holy Spirit you will abound in hope and overflow with confidence in His promises.” Romans 15:13
” Rejoice in hope, be patient in tribulation, be constant in prayer. Contributing to the needs of God’s people, pursuing [the practice of] hospitality. Bless those who persecute you [who cause you harm or hardship]; bless and do not curse them. Rejoice with those who rejoice and weep with those who weep. Live in harmony with one another; do not be haughty [conceited, self-important, exclusive], but associate with humble people [those with a realistic self-view]. Do not overestimate yourself. Never repay anyone evil for evil. Take thought for what is right and gracious and proper in the sight of everyone. If possible, as far as it depends on you, live at peace with everyone. Beloved, never avenge yourselves, but leave the way open for God’s wrath and His judicial righteousness; for it is written, “Vengeance is Mine, I will repay,” says the Lord. But if your enemy is hungry, feed him; if he is thirsty, give him a drink; for by doing this you will heap burning coals on his head.” Do not be overcome and conquered by evil, but overcome evil with good.” Romans 12:12-21
” No, in all these things we are more than conquerors through him who loved us. For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.” Romans 37-39
I could honestly keep sharing more scripture but I will stop there. 1 Peter was also a very helpful book on suffering but honestly scripture on suffering can be found all over the bible. It became clear to me that I needed to continue to believe in hope for a cure, complete healing, and have unwavering faith through all of this. I couldn’t allow the enemy, others, or my own thoughts to distract me or cause doubt that God would heal me. Yes, it is okay to explain to others that these conditions are chronic and there isn’t any cure but it’s not okay for these illnesses to become my identity – I think that’s where it gets easier to believe that these conditions will never go away. I believe this because it is what I have witnessed with some people in the endometriosis and IC communities. Of course not everyone in these communities feels that way and I do not mean to judge anyone who has made this their identity.
For me, these diseases are in my body, but they aren’t mine. I don’t agree with Christians that blame those that are sick by telling them they are causing their illnesses to stay because they call themselves sick. I also do not agree with Christians who think they believed harder than other Christians and that is why they have received their healing and others haven’t. Is it possible that there are Christians who are truly lacking in faith and that is why they have not been healed yet? Absolutely. However, I feel like the Christians that believe this in general are actually operating in pride and feel that they somehow willed themselves to healing above others. Those beliefs are problematic on many different levels and are so hurtful to those of us who truly believe in healing but have been waiting for many years. Usually those types of Christians have not suffered with chronic illnesses or have not suffered for a long time and have no clue of how to relate to that particular struggle.
Overall I do agree that we really shouldn’t make these diagnoses our identity. I believe it is okay to explain that I am sick and share that I believe that complete healing from God is coming; it is okay to describe the symptoms of the diseases but I don’t think we need to cozy up to these diagnoses and clothe ourselves with them.
I’m sure “my endometriosis” or “my interstitial cystitis” has slipped out of my mouth before but I really make an overall point to not speak about it that way for the most part because I want them out of my body; I don’t want possession of these illnesses and for someone like me who is sensitive to my internal dialogue, I really need to be careful with my thoughts and words. Truthfully, we all need to be careful with our thoughts and internal dialogue but some of us are a little more sensitive than others and I am no exception. I also don’t feel comfortable telling a fellow endo warrior or IC warrior how to spiritually relate to their own experiences and struggles with endo. For clarification, I can really only speak for myself and what I’m hearing the Holy Spirit tell me about how to navigate these waters of chronic illnesses. If you’re reading this and feel like saying “my endometriosis” is not harmful to your healing journey with God, I respect that and am not critiquing you for choosing to reference your battle in that way. I feel that the Holy Spirit was very clear with me to be careful how I reference these diseases I’m seeking healing from but this is what I was told; I don’t expect others to share this same revelation.
As I was receiving this spiritual revelation, my physical symptoms were beginning to get worse as we entered into the month of November. I was continuing to go to physical therapy but was not able to gain any traction with treatment. It seems as soon as my PT would treat a particular area it would be back to the way it was the following week regardless of what I did at home to remedy the issue. One day I was reading the comments on a post in one of the endo groups where I saw that group mentioned again in regards to healing. The name of the Facebook group is Nancy’s Nook Endometriosis Education and was described to be an online resource library for endo patients. The woman who shared this group said she found her endo specialist via Nancy’s Nook and has found permanent relief from this disease. I had been interested months before when I saw this group mentioned but let doubt and fear creep in so I didn’t pursue the group because it seemed too good to be true. However, this was the third or fourth time I read wonderful reviews of these specialists. I felt the nudge to investigate the truth of these claims and decided to take a leap of faith and join the group.
Joining Nancy’s Nook was the turning point in this battle for health. The flood waters from this storm were threatening to enter our house and it was as if God built a hedge of protection around us from the raging waters.
The storm was still raging, but the flood could not harm us.
Chronic Hope Part Five Coming Soon.